I really resonated with using the word “disabling.” I have migraine attacks and mental illness that fluctuate in frequency and severity. I don’t feel I should call myself “disabled” but my symptoms are often debilitating when they do pop up.
That's exactly how I feel with my depression. It definetly keeps me from functioning properly a lot of times and I feel severely hindered and impaired in life. I still never dare to call it a disability.
This is the first time I’ve heard IBS mentioned as potentially disabling, and that was super validating, so thank you! It’s not the only chronic physical health issue I deal with, but it is the one which has effected me for the longest in my life, and I find it’s often brushed off as not a big deal, when I know for many of us who deal with it, that’s simply not the case.
Felt the same way. I have a very light version of IBS, but it also had a negative impact on my life, and for a little while I struggled with body image issues and my sex life.
Yeah, it’s not IBD, but if you have to plan your life around potential bathroom mishaps, it’s functionally similar. And at times it can definitely be debilitating. I love that Hannah is so inclusive!
I’ve had my IBS be so bad at times I wish I would’ve been able to have more treatment options even like a surgery just to get my quality of life back again.
As a medical student we’re obviously very much taught about ulcerative colitis through a medical lens, signs & symptoms, treatments, complications and all that But your videos are actually really helpful for me in terms of what living with a chronic illness is like outside of hospital?Like until I saw these videos, I wouldn’t have even thought about what having sex with a stoma would be like for patients 🙈 it’s just not something we’re taught at all Would LOVE more education for medical professionals about having these kinds of conversations with patients cause it’s important and we should be talking about it!
Yes! It sucks that patients are often the ones left to educate us because so much education is either superficial or through the medical lens. Even needing to rely on people willing to share their experiences on social media is unfortunate. (Though there is great research out there too)
I totally agree! I'm a children's nurse and would love to have had more training on this as thinking about disabilities in the long-term is a big part of what I help lots of families with (obvs, how we talk about the implications for sex will vary depending on the age of the child!)
I had a temp ileostomy in 2016 for Crohn's and as of one month ago now have a permanent one! I already feel so much more confident and healthy. It's great to see you raise so much awareness for IBD and Stomas. Thank you! :D
Your discussion of disability not being a binary concept really resonated with me because I have scoliosis and had surgery to correct it, so now the majority of my spine is fused. This means that I can't do certain things like ice skate, horse ride, go on trampolines etc, but it is also disabling in day-to-day life because my back is often really sore, and I can't bend over very much which makes mundane activities like cleaning for eg harder. I don't view myself as disabled, but find my condition disabling
hi. Sarah. Why did they fused for spine??? why not just putting some metal in there and have a semi corrected spine?? I have scoliosis too and yes, I cannot jump high or run but daily things I can do. Just wondering.
I had spinal fusion surgery 10 years ago and just wanted to send some solidarity ❤️ I have found that developing abdominal strength has helped so much with back pain xx
Hi Sarah, I also had the scoliosis surgery and feel the same! I kind that have a normal life but also feel very disabled sometimes, it's confusing. ps: sorry if the english is wrong
Didn’t really think about sex and a stoma for a long time having had one since I was 8. But I’m at uni now so it’s obviously a lot more present! This is an awesome video for me, thanks Hannah!,
I really appreciate your view on disability. I've always had a disability due to my chronic illness, but never felt right to call myself disabled? (maybe it's just internalized ableism..) This makes a lot of sense!
I feel the exact same! I have suffered from chronic migraines for the last 4 years. I know chronic migraine can be classed as a disability and it certainly had a disabling effect on my life but I don't feel like I have the 'right' to call myself disabled just because it's not constant or a "physical", visible disability. I'm sure it's internalised ableism as I would never think the same thing about someone else!
I usually call myself chronically ill, as on any given day, I will have had some amount of joint and/or nerve pain, and I can't stand for very long. Some things are certainly disabling though, like long lineups, stores and parks without public seating, and some washrooms. I remember hearing about the social model of disability, that basically says there's nothing bad about you, but rather that society doesn't meet your needs. Which includes a lot. I open cans left handed, and if I'm given a right handed can opener, even that can be disabling if my only food is in a can. Thankfully the only time that particular situation happened was in middle school and one of the teachers helped me out. But it really does put a different spin on things, and I like that a lot with my allergies and ADHD as some environments work for me, others are a struggle without meds (most of which I am allergic to). However, my bones not staying in place is definitely something wrong with my body, so I do tend to use the term disabled for myself now that I'm coming to terms with how my weird bones affect me.
I never call myself disabled even though I have ADHD. Sometimes I just make up excuses like I’m forgetful or I’m clumsy, because ppl will just look at me like I’m making an excuse for mistakes I make.
Thank you for the video, I have had a colostomy for 11 months now, I have stopped trying to date or find someone in my life Due to feeling self conscious. Thank you providing me a diffrent view.
My surgeon and the stoma team were very sex positive before and after surgery. In addition to talking about things like supportive lingerie, they taught me about safety. Before I even had surgery the stoma nurse explained that some people enjoy sexual contact with their stoma in their relationships, and that you can get an STD from sexual contact with your stoma. They showed photos of herpes on the stoma as an example and taught about safe penetration. While I don’t engage in that sexual contact I am really appreciative that they are proactive about that. Amongst the medical community it is usually ignored until it becomes a problem because it is an uncomfortable subject.
I would like to say thank you to you Hannah last week it was my 3 year anniversary of getting my stoma (called puff) and it was very traumatic I was diagnosed with ulcerative colitis and one month later I had surgery and I was only 16 at the time but it was your videos that helped me through and educating me on the condition that had been thrown at me but also gave me the confidence to get into my first relationship and your video guide me and made me feel so comforted and reassured that my stoma and my body is normal so thank you so much
As a med student one of the reasons why I am interested in gastroenterology because of your story. I am very glad to know the side of the patient in dealing with stomas and UC.
Hearing you talk about how your relationship with Dan really helped is interesting to me. I broke my neck a couple of years ago age 22 and somehow in the midst of nearly dying ended up getting together with someone who I'd cared about deeply for a long time before. I couldn't shit normally, I had a catheter, I was suddenly paralysed from the arms down, a full time wheelchair user for the rest of my life and it could have been a really tough time. BUT, like you, I'm a pretty adaptable, open, upbeat person and to be honest, being disabled never really felt like a big deal to me. I was once private. And fiercely independent and now I wear my insides in a bag around my leg and tell strangers that I pee from a tube. But these are facts. And I own them.. And I know they hold no shame, because when I look at another person, the things I want to know are so much more than how many steps they've taken that day or when they went to the toilet. My dreams are bigger than my body and my self worth doesn't live in my legs. Plus, disabled people are pretty fucking funny and once I decided life was too short to give a shit and continued to act and joke about my piss bag as it just being a normal bloody tool for waste elimination or peed all over my friends floor- the people around me proved they didn't give a shit either (queue my university friend trying to gymnastics my leg in the air to empty my bag over a non-accessible loo at a climate change protest while we pissed ourselves laughing- okay maybe the pissing part was just me). But I think having that relationship- not even going into hospital in one (actually, id literally been on a Tinder date when it happened... don't advise midnight spontaneous swims in a duck pond 😅🙈) did really help. Someone driving across the country, coming to patient ed lectures about bowel care and pressure wounds and making out in a darkened hospital corner until security guards outed us: it showed me that I was still loveable and sex could still be fun. And so when we broke up and I moved to Scotland to pursue my Masters without him, I felt confident in the dating world- though, given my Tinder history, maybe I should try Bumble 😂😂 Anyway thank you for sharing. What you do is important. You're great.
I had dental surgery a little while ago and the doctor asked me if I had a boyfriend (I’m gay…lol) but I was single (ish) and I said no. Several days later, I realized I had no idea when it was safe for me to have oral sex (or even kiss!). It was such an awkward experience and I was NOT going to call my surgeon and ask. I felt like maybe if I had said I was in a relationship or he knew I was gay he might have given me any bit of information (maybe not though). I’ve also had a nurse ask me (during an std screening where I mentioned a breakup) what the boy’s name was…and I had to say “um, well, she’s a girl…” it would be GREAT if doctors brought up how health impacts sex more…
I have had my colostomy since 2019 when I was 22 due to bowel cancer (I’m okay now!) and I can honestly say you are the reason I didn’t feel so scared or daunted by it. I’ve been watching your videos for years and watched your journey way before I was even ill. When I was told I needed to have one, all the doctors were making it sound so scary but I was just sat there like “hey I know all about stomas & what they involve because of Hannah!” 😊 Thank you so much for spreading awareness and talking about them because there’s still the perception that it’s only old people who have stomas and that is so not the case!! Seeing someone my age with one and knowing I could still be confident & enjoy life helped get me through the most awful time ever. Thank you Hannah, you are an inspiration ❤️ I’ll be forever grateful. (Also, I have the exact same crotchless bodysuit thing as you and it’s amazing!! Definitely makes me feel much more confident and takes away the embarrassment of the bag flapping around or making crinkly noises lol.)
I very much relate to you saying her discussing stomas made you less afraid. I have been watching her for years as well and now my mom is getting a stoma so I also feel less afraid going into it and helping her.
Thank you for sharing all this info and experiences of living and adapting to a stoma and or disabilities! I had pre colon cancer surgery and have and internal pouch. Someday will have or choose to have surgery to go to a stoma! I can not put into words what a great video this is for me.
My granddaughter aged 16 has just had Stoma surgery about 6 weeks ago. Hopefully her quality of life is like yours You are such an inspiration and open. Making us feel more positive watching your videos.
I just want to say that I have IBS and mental illness and consider myself to be disabled. I've struggled a lot with identifying that way because people don't often think of it as a disability, but it has definitely severely limited my ability to fully function in the world and has required accommodations in school and work
If using the term disabled helps you cope with and understand your illnesses, that's great!!! I find it incredibly helpful to view myself as disabled (I have dysautonomia and mental illness) and, as you mentioned, it was hard to learn to identify myself that way but it's has helped so much now that I'm more used to it!
Oh my goodness wow! I can’t believe it’s been 4 years. As an able-bodied person this whole journey has been so informative, interesting and beautiful to see you navigate. Thank you for sharing as always x
Hi, I'm Liz and I'm a second year medical student and I've just had a subtotal colectomy leading to a permanent ileostomy after a severe flare of my Crohn's disease. I just want to say thank you so much for your videos on stomas, on food, sex, relationships and surgery. I've only been out of hospital for three days, so everything is still pretty raw and new, but your videos have really helped me and given me hope. Thank you so much! ☺️ All the best, Liz
I’m deaf (I wear hearing aids) and I loved the conversation are disability! it is not talked about enough so I’m glad your videos are broadening people’s perspective!
This is such a great video. I've been disabled due to chronic illness since I was 18 but didn't feel I had the 'right' to that word until my 30s. Now I'm proud to say it and for the strength it's given me. I know watching this back when I was first ill would have helped that. So thank you. Also, I appreciate your comments about orgasms and core strength. Sometimes I just don't have the physical strength for an orgasm no matter how good the sex, and it's so frustrating! I'm glad to know I'm not alone in that.
I love what you're saying through all of this. I had breast cancer at 24, I had a mastectomy and 2 years later had DIEP flap reconstruction that used my stomach tissue and recover from that was extremely disabling for obvious reasons but sex has always played a huge part through my whole recovery. I had to learn to love my body again and self love was difficult for me for a while but I got it back and now I love my body and my scars, I've found a new partner since and he loves my scars too. I still think we are all a bit too prudish about sex for some reason but we need to normalise speaking about it and all the different things around sex. Keep up the great work and thank you for sharing
4:00, thank you for mentioning the spectrum. I have celiac disease and never thought of it as a disability until it was on the list of disabilities when I was applying for a new job. It does impact my life every day, and some days I feel like I can barely function if I’ve been glutened but it doesn’t feel like a disability. It’s a very interesting thing to me I guess
There is a great podcast called "OT After Dark," and they have an episode or two where they talk about accessible sex toys specifically for people with disabilities! They brought on the head of a sex toy company for an episode and it was excellent. Nice to see that people are talking about it. Also, in Occupational Therapy, sex is considered an activity of daily living (ADL) marking it as one of the primary activities you need to survive. Pretty cool if you ask me!
Hey! Love OT after dark. There are a lot of great workshops put out by sex shops too - they often have a better grasp of it than health professionals (though they also have a certain assumption of folks being ok with the topic being breached so that can move the conversation forward more quickly as well).
Also related for folks unaware of OT. The removal of (consentual mutual) sex is occupational deprivation/injustice. So gaining access to sex in settings like prison or group living homes is activism and (when done well) is a point of advocacy for OTs. Vaguely related, the removal of sexual language (and swears) from adult communication technology poses a similar barrier because a person loses access to the tools required to communicate their desires. People with disabilities are also more often than not people who are sexual! Access to sex, sex communication, sex tools, and safety in these areas and communications is important.
This has been such an eye opening interesting video! So much of this has resonated with me. In 2021 I had a miscarriage and I now feel this disabled me from having sex but not straight away, we pregnant with our rainbow baby and then I was too scare to have sex until I was about 20 weeks just in case anything happened, I wouldn't even masturbate. I never would have thought of it this way until I watched this video and it has definitely helped me be more empathetic and understanding of other.
I’m so glad you mentioned IBS!!! I’ve found IBS for myself can be deeply debilitating. 1.)It’s required me to be very careful with what I eat and when I can eat. And it’s very difficult cause even if you do an elimination diet go try to see what is a trigger food or try to follow the fodmap diet it doesn’t mean everyone has the same trigger foods which can make it more difficult to figure out why your sick. I’ve found it’s worse when things have multiple ingredients cause then I have zero idea. 2.)I have to really monitor how medications can affect my IBS to make it worse. And this sucks cause many pain meds are bad triggers for most people with IBS. So if you need them for something else it’s always a trade off- being in pain from one thing or a bad IBS flair up. 3.)This is made worse by the pain with IBS. Between the bloating, the tenderness of your stomach, and the spasms and cramps you can feel it can be so bad it makes me nauseous( and that’s taking medication specifically for my IBS). And that’s on top of having like the worst poop of a normal persons life, every day. 4.)How close IBS is tied to overall mood also means whenever I really stressed my IBS is worse which makes me more stressed. 5.)It can be really time consuming. You have to often prepare a lot more, like I always make sure bathrooms are close by wherever I go, and usually bring a extra pair of pants and underwear wherever I go. The time I’ve spend in the bathroom everyday alone, events I’ve missed or had to leave early, or even just having to spend more money to get good toilet paper just stinks. 6.) as a AFAB person, my IBS makes my period worse. 7.)I have also because of being AFAB and having IBS had a doctor dismiss my any pain in my stomach as just IBS. I had to go to the hospital 5 times for over 12 hours each for what I thought was a gallstone (east coast Canada) to finally demand a doctor run further testing cause I found out that the test that the test that X-rays only showed some types of gallstones when there is enough calcium in them, and if they don’t they won’t show up. Low and behold when I asked for a ultrasound I had a gallstone the size of a tennis ball and I was close to it exploding. Long story short the medical system sucks when it comes to taking a lot of people health seriously and many doctors would rather have a ego then say they are unsure and consult someone else. Like I have other chronic conditions and disabilities but it’s so frustration that something that can be so debilitating, life altering, and impactful on my life and most doctors could care less.
I don't have IBS specifically, but I have a lot of food intolerances, and it was a pain to figure out. I couldn't even go on a date properly before I went through a very long process of finding out what bothers me. The joint pain and nerve pain is still a bit of a mystery. I'm also in east coast Canada, and waiting for a connective tissue specialist, which is taking a while. I find during PMS, my joint pain and hypermobility gets worse (more likely to partially dislocate something), and when it comes to going number 2, my insides are more likely to fall outside, even if I'm not constipated, which literally stinks. I've been to so many doctors and tests, private/paid and public, and yeah, it can really affect the mood. Year 6 of complaining about pain even after going gluten (and a bunch of other stuff) free, and still not much help other than physio for the most hypermobile joints. Frankly, between trying to finish my degree, and all the medical appointments I have, I'm too tired to be intimate most of the time, but I'm so glad this conversation is happening, as I do plan to get married, and navigating that with my partner is definitely something both of us have talked about.
This is such an important topic and I’m so glad to see it being talked about more openly in these kinds of spaces and hopefully more soon in the general mainstream conversations as well! I think one thing I’ve really learned from my experience with disability is how much the treatments like medication can really have an effect on peoples sex life and in my experience it’s never seen as a priority to check in on that by doctors even when those side effects are fairly well known and commonly cause difficulties in that area of life. I definitely wish particularly psychiatrists and gynecologists would ask if there are any concerns there as a routine thing since mental health meds and hormonal treatment have the potential to really change things.
I had to fill in a survey during cancer treatment that asked all kinds of things about sex and body image etc. well intended but very very poorly executed, full of assumptions with the result that no meaningful data could be gathered. I was then accidentally part of a research group, an off shoot byproduct of which would have been a better survey. But it didn’t get funding. So some medics do realise they should be doing this.
Yes! It took me years to finally ask my psychiatrist if being on various antidepressants since the age of 12 could be the reason I had never had an orgasm, and if anything could be done about it.
As a single 20 something who’s had a stoma for a couple years, I was terrified to show people and tell guys I was talking to about it. But apart from general curiosity questions no one’s been phased by it. Even ons who I’ve not mentioned my stoma to beforehand. I second Hannah’s comment about stoma nurses being the one to bring up sex after stoma surgery, especially even with people who aren’t in relationships!
The idea that disability is not a binary is so eye-opening for me! Having had several leg surgeries after an accident, for a year I was using crutches or a cane to be able to get around. I even had on of those "please offer me a seat" badges for the tube but I often felt like a fraud, thinking "but I don't have a real disability!" even though my mobility was severely limited for a long time. I am very grateful to be fully mobile again, but I realize now this shouldn't discount the struggles I went through for that period of my life
I am glad that you have a good view of disability. I was the epitome of perfect health for my whole life. Got COVID at work due to negligence and I ended up with long term symptoms and was put on "temporary disability".
I sent one of my clients your playlist who had colon cancer and was having a REALLY hard time coming to terms with their stoma, colostomy bag, and sex. I moved so I don’t see them anymore, but I hope they subscribed and see this one too!!! Your openness is so helpful for others and I tell everyone I know about your channel! 🖤
I love what you said about a "disability" not always being permanent. I had an accident where i badly injured my knweethat made me have 3 surgery's in 6 months and took me a whole year to recover. Still cant bend it properly or rest on it. My partner and I had to adjust and re adjust a lot during that time.. but that was ok.. made things more "interesting"
I remember watching you through being so sick. It was so hard to see you that way. I am SO Happy to see you today, well, married, soon to be mother, and just HAPPY!!!!
I very much appreciate you speaking about sexuality as it relates to disability. I find that society at large will often brand those with disabilities (especially those of us with neurological disabilities) as either sexless or incapable of responsibly exploring our sexuality. I’d love to see more videos from you exploring sexuality in the context of disability and busting stereotypes.
As someone who went on disability assistance mainly for mental illness, it took me some time to identify with the term disabled for myself (though being Certified Disabled by the govt certainly helps validate that). A couple years later I was diagnosed with Crohn's and by that time I'd already embraced being disabled, and have found the community of disabled folks/spoonies invaluable. Mutual aid, solidarity support, awareness about access needs and neurodiversity, sharing and creating resources, etc. It's been built unfortunately out of necessity and lack of support/resources from ablebodied folks, but is full of creativity, ingenuity, compassion.
My husband has a stoma for just over a year and when he first had his surgery your videos are the ones that actually gave me some insight as to what this actually is and what will entail. I remember having seen your story and your experience, it really helped me cope with that horrible situation. I think it's really great that you're so open about it. Having a stoma or any kind of disability is nothing to be ashamed of. This is something that happened to your body and as you said so nicely, it's one of the changes your body has undergone in the course of your life until now. Everything changes and so do our bodies. We should embrace it, learn to live with it and educate our friends and people around us as much as we can
I had ACL surgery right when I was starting a new relationship and that was hard and weird with sex. Took a shit ton of communication and trying new positions frequently. I also (most likely, not diagnosed) have IBS and that definitely affects my sex life. There are many times where I'd like to be doing stuff but my stomach is too upset too.
The biggest thing I've learned from being specifically a kinky disabled person, is to negotiate what happens if a flare up occurs during a scene. For instance, I have spells of passing out and it happened during a scene once. I was unconscious, so I was unable to safeword. But my partner knew me well enough and recognized the signs I was going to faint and stopped the scene.
The way you outlined disability really resonated with me. One thing I’ve learned about sex, and I think you’ve talked about this, sex isn’t always about penetration.
Really love the point on disability not being binary. I have chronic illnesses that massively disrupt my life but I’ve always struggled with feeling like I don’t have the right to call myself disabled because I (sometimes barely) manage to work full time and my illnesses aren’t highly visible. I’m learning to embrace identifying as disabled more though.
Can affirm that disability in romantic antics can teach good awareness of some basics that'd be useful to anyone, like how to plan and pace the antics around energy levels, do regular check-ins as to physical comfort, recognize how much of people's ability and engagement in said antics is due to the situation (more than anyone's individual skill or drivenness or somesuch), etc.etc
I had an iliostomy for 2 years in 2004 reversed in 2006 after a ruptured appendix. i coped with it well because i was lucky to survive the many complications from the appendix rupturing days before me being treated. I always empathize with people with them since.
my mom might need a stoma one day (she had colon cancer, she's all good now) and I appreciate how informative and open you have been about it! If she does need one I will certainly show her your videos!
what counts as disability is always a weird question. I consider myself disabled because I have a condition that affects me in more mild ways but is typically more serious in some other people. I have a sense that there’s strength in numbers and unity, but I never know if it’s helpful to others or not. I love hearing intracommunity dialogue on this kind of thing
As a medical professional I can say I love that your videos exist and I have recommended your channel once to a UC patient who was about to have a colonectomy - and I really think it helped her. So much so good advice and great insights, thank you very very much. And happy anniversary :)
I wish my Dr had recommended videos like this. I was so lost. Being diagnosed with rectal cancer at the beginning of the pandemic having the ileostomy and not able to get the bags to hold etc. Was feeling like if it would have been permanent I honestly don't think I could have gone on. A lot of it had to do was lack of information and support. I was able to have the reversal surgery alomst a year later. That in itself is a whole new ball of wax. Poop still not "normal". Just let me say a bidet and perod panties are a godsend. Because of all the other issues and my husband's diabetes sexual relations wasn't part of my life. I so admire your honesty and sharing of your journey. Agian I know my journey would have been not as daunting if my ostomy care nurse had recommended videos like yours. Thank you
I really love and appreciate your videos! I have worked for 16 years as a nurse before I became disabled myself. As a nurse your open sharing was very helpful to be able to understand my patients better as I had lots of patients with a stoma. Interestingly I have also come to see that most nurses/doctors won’t speak about sex with their patients when they undergo changes (in whatever way). For me it was always important. During the nursing education it was a part we learned. And I felt it is really important to speak openly about it - if the patient wants to of course. But also just to open the space to let them know there is a person they could talk to if they‘d want to. When I worked as a nurse in a neurological Rehabilitation clinic I had many people ask me about their sex life after they became paralyzed - young and old, mostly male. Now as a disabled person myself it’s a whole different ball game. And I wished for myself that professionals could be more open and helpful offering resources for example.
I appreciate the whole video, like you said, anyone could become disabled at any time, so many people have disabling situations. But my favourite part you mentioned was about how pausing sex is okay and normal.
Cognitive and sensory issues in disability and sex are really important too! There are ways to compensate or adjust while still finding sexual pleasure or enjoyment even with these difficulties. But if you go online for advice it may end up leading to being shamed for not being up for a "normal sex script" act or process, which is frustrating.
Sensory is a big thing for me. If even one small thing in my surroundings is the least bit bothersome, I'm completely out of the mood. Like oh, your phone vibrated on the shelf? I'm out. My partner and I are waiting until we can have our own home due in large part to that reason. Some days even hugs are a challenge, so we definitely have to communicate a lot, and often talk about it when I'm having an easier day and not already stressed.
Epilepsy has taught me a lot about the impact of disability on the other person in the relationship. I’ve had seizures during sex but as I mostly don’t remember my seizures at all, I think they’ve been significantly more traumatic for my partner than for me. After it happening during oral sex I noticed my partner hadn’t initiated that again for a few months. It wasn’t til I raised it that he realised he was anxious of it happening again. I can imagine other couples might have struggled to see the other person as a sexual being at all for a while after that kind of experience. More generally, in periods where I’ve been unwell it’s been hard to balance getting the support I need without turning my status as a girlfriend into one of a patient. I’d be so interested in your thoughts on navigating these dynamics as a couple.
About the orgasms requiring core strength: So right. I have been doing core-work for two years now because of a back problem. Let me tell you.... Core-work is not only beneficial too alleviate back-pain... :p Great video, Hannah! Edit: Just a note. Putting the main take-aways on the bottom of the screen is not very useful when you use the subtitles in YT. I'm having trouble with my hearing, and I just noticed they overlap when I watch the video with subtitles.
My brother had ulcerative colitis and he refused to do the surgery- we had to respect his decision. He died age 30. It's a painful topic for me but an important one.
THIS WAS SO INTERESTING AND RELEVANT. I clicked on it because I knew there would be surprising things to learn that would be relevant to me, which is in turn because I'm familiar with your content - had I not been familiar, I think at most I would have expected it to be interesting, but not relevant. Which proves your point that disabilities need to be included in discussions more!
Hi Hannah, thanks for chatting so candidly about sex, relationships, and disability. It's a great message to get out there. You are absolutely right unless you've had some sort of experience, it's not talked about enough and unfortunately, it's still got a huge stigma attached. Years ago I worked for a charity supporting young people with disability. I was asked to edit a book giving guidance to life with a disability. Surprise, surprise, there was not even an inkling of a mention of sex. So, I ended up writing a chapter. I also ran workshops on it (with young people and their parents - separate workshops!). Nowadays, as an inclusion specialist, I continue to share your passion and have always been very open and encouraging communication around sex and the intersectional individual. Anyway, it's fantastic to keep the conversation open. Thanks again. Sarah
Wow 4 years man.. I remember when ifound you and I felt you had such value in your opinions and who you were. Then this happened and to see you grow along the way and the process. I really can't believe its been 4 years, that means I have been watching and listening to you for about 5 years. Cool to see.
You are great, Hannah. It's obvious how you want to help people. I love the way you talk about everything so openly to help others with their struggles. I really admire you. Watching your videos always brings a smile to my face. Thank you for everything that you do.
This video is so incredibley well articulated, so much good advice, with real examples and I think more people need to know these points. Thank you for sharing your experience. Point 8 where you talk about communication being left out in relationships that dont have communication as a neccessity is so tragically true too
hi !! i'm a recent subscriber to your channel (my partner recently sent me a lot of your informative videos on sex & relationship oriented things), and i just want to say, thank you so much for also sharing in regard to your stoma and just bringing awareness to your health condition !! my grandmother has a stoma as well (hers for diverticulitis) , and i can remember years ago when she got it, and just the huge adjustment it was for her. it's just very refreshing to see someone making content in reference to having one.
The seeing yourself as disabled versus viewing it as something that disables you hits home. I have hypersomnia due to an accessive need of sleep. It is not recognised as a disability, but it really can impact my daily life. Often I am just a walking zombie not able to really process anything. Which is funny because I like to work as a researcher. It also heavily affects my relationship. Having enough energy to even just hold eachother can even be a stuggle
"It is not recognised as a disability" is meaningless. There is no list of disabilities. If it impacts your life in a way that you find disabling, i.e. it means you can't function the way a healthy minded able-bodied person can, you have every single right to call it a disability and call yourself disabled (although of course you don't have to if you feel those terms don't serve you). I hope you're doing as well as possible at the moment ❤️
So much yes on doctors bringing up sex on their own! Even when I got my IUD (at a GYNO for fuck's sake) I wasn't really told what kinds of sex would be safe immediately after the procedure - obviously they told me not to have penetrative sex right away, but what about oral? What about finger stuff? Like jfc this is a literally a device you get put into yourself because you want to have sex without getting pregnant...
My partner has chronic fatigue, and I’ve realised that sexual currency (touching each other in ways you wouldn’t other people) is so much more important, than the amount or type of sex you have
Thank you Hannah for this video & raising awareness 😊 someone asked me how long I'd had my stoma recently & it took me a while to work it out (7 years) because its just part of my life now 💁♀️ I was nervous how having a bag would affect sex, and even bought bands to go round my tummy and nighties etc to cover it, but honestly as soon as I found the right appliance for me (shout out to Sensura Mio bags 😅), I found I preferred being in my birthday suit! 🤗 so yes, great excuse to buy cute undies & experiment, but also absolutely possible to go without. Happy stomaversary Hannah xxx
Going through cancer treatments right now, I definitely feel the "disabling", even if I'm not disabled per say. The fatigue, lack of enthusiasm and love towards my body, and just, fucked up hormones in general really has changed the way I feel about sex (don't feel like initiating it and don't often think about it or want it, but when into it, enjoying it). My partner (of the last 15 years) sometimes worry because I never make moves on him first and thinks he's not desirable anymore, but I know it's the situation we're in and I often feel like I'm failing as a partner. Add that to having young kids and being in a pandemic, and you have a perfect recipe for an unsatisfied couple 😬
I have chronic conditions that vary a lot, and communication is so important. Some days I'm hypersensitive where every touch hurts, and I can't even hug my partner, while other days I'm really emotional and can't do much of anything but hug my partner (or a plushie if I'm by myself). I am asexual which has led to all kinds of conversations, but with my disabilities in particular, it's all about consent in the moment for everything. Hugs, kisses, being picked up, whatever it is, can affect me in different ways (usually affected by weather and hormones), and knowing for that particular moment what I'm able to handle and would like, is key. I basically have slippery bones, I'm getting tested for a connective tissue disorder, but I get dislocations or bones getting stuck, a lot. Anything from turning my head too fast, to sleeping wrong, or even walking without compression socks can sometimes cause joint pain, and I have to be very straightforward with knowing what my limits are for a given day. I like big hugs, I like having my partner lay on me, but sometimes those things can pop a shoulder partially out, and I have to do a lot of very careful stretching to get it back. I also have sensory issues. Getting migraines or twitches from scents, sounds, fabrics, or certain lighting, so I haven't felt comfortable enough to do anything too intimate, but my partner and I want to get a house and get married, then we can control our area to meet both of our needs. Like waiting for marriage out of necessity. I'm sure things will still take time, and lots of trying things to see what works and what doesn't. I'm still learning what my triggers are, and what are safe things I can use even when I'm having a bad day.
I have a chronic pain condition, it’s as a result of my nerves just having increased sensitivity. So sex has always been different for me. But I think it’s like for everyone else. You find your groove, communicate with the people you’re having sex with. Try things that are within your sphere of maybe. I feel like it’s given me the personal mindset where I’m comfortable saying if I don’t want to do/try something. Because some things I can’t do and that’s given me a difficult skill set to learn.
The point about disability not being on a binary is so interesting, I’m type 1 diabetic and for years I would NEVER have considered myself ‘disabled’ because I felt like I didn’t fit in that box but this illness can most days be manageable and some days absolutely floor me and ‘disable’ me, especially in short bursts of time
Not a medical professional but I would like to say a big thank you for your videos, one time I was involved in a situation where a lady was having a flare up of her colitis and she had a stoma. I was with her until eventually an ambulance came and having seen your videos in the past, it didn't feel as foreign to me as it might have done if I'd never learned about stomas, why people have them and what they do etc.
Hi Hannah! I really liked the video! I have had diabetes type 1 now for almost two years. I still feel like it's completely new sometimes and most of the time I feel pretty negative towards it. Like my body kind of betrayed me. Although these videos cover you're experiences with a stoma, there are a lot of things for me that translate too my diabetes. The way you talk so open and positive about it makes me always feel a lot less stressed about my diabetes and makes me feel like I will be able to handle it. So thank you for that!!!
My partner left me shortly after I was diagnosed with ME/CFS however he was my primary emotional support and caregiver through my 2 first years of the illness, seeking diagnoses and dealing with the trials and tribulations of a chronic illness.. it defo had an impact on our sex life/relationship... In that our primary concern became physical and emotional wellbeing over sexual wellbeing- as we couldn't do that unless we were in a 'gd place' mentally/physically which took alot of work. We didn't acc separate bcoz of my illness.. but coz our life paths were diverging. Has made me think ALOT about sex & disability tho...
As someone with rheumatoid arthritis, I am grateful for any sex educator for including disability in their discussions. It is so tiring to have to do that for every partner and having somewhere to refer them is nice. I guess I have learned the importance of anti nflammatories before sex, making sure I am not holding positions for too long, and that people only get so much hand work from me before I have to give up from pain. Work arounds like edging (rests!), more mouth stuff and stopping to make out and reset up are fine. And that it is okay to make this clear and not just suffer through. The hidradenitis supprative has peoved to me that people can and will ignore a giant bleeding hole/scars if it means they get sex. 🤣
Agree with you on what counts as a disability/disabling. I would describe disabilities as occuring on a spectrum. Just as neurodivergence is described as a spectrum it doesn't mean one person is more or less disabled then another, it is not a single linear spectrum but a series of areas of which mobility is only one. People can be affected in more than one area. Obviously you can be fully mobile and still disabled in other ways but I think the idea of 'blue badges' and the common symbol of a person in a wheelchair bias many able people's image of disability to be something that you can see. Hence the growth of education around invisible disabilities
While I completely agree with you that certain conditions and situations can disable people (I don't have the formal IBS diagnosis yet, but that's basically only a formality after almost 9 years of living with it and it's been debilitating), I'd also advise anyone to still be careful with that phrase. In Germany, a big organization that positions itself as an advocate for disabled people had an ad campaign that featured a slogan along the lines of "people don't have disabilities, they're being disabled", which was criticized by several disability activists that rightfully pointed out that even if all of society was suddenly inclusive and barrier-free, they still had their conditions and their disabled bodies (e.g. that they were still deaf, even if everything was subtitled). Disability is a defining trait for a lot of people, so phrases like this sometimes can sometimes do more harm than good. Still, I really appreciate you bringing this subject up, it definitely needs more attention!
I know this is kind of off topic, and you may already be familiar with it. A good example of toys and disability in popular culture is the series Grace and Frankie. Slight spoiler: Grace, an older woman, injures herself while using a vibrator; this turns into a whole business geared towards older women. This is just one of many plot points in a show primarily about two very different older women living in a house together after their husbands divorced them to be together. Since the show brought the issue of disability and toys to my attention, it seemed worth mentioning.
I feel similarly about disability being a spectrum. I recently got diagnosed with autism which makes me legally disabled (I receive disability benefits and supports) but for most of my life I had no idea I was "disabled", just that lots of things were confusing and difficult. I put a lot of my difficulties down to depression and anxiety and the side effects of the medication I was on, but it just wasn't the full story. It probably puts a dampener on my sex life too because of how sensory sensitive I can be depending on the kind of day I've had
Wow I'm so glad I just found you ! I also have ulcerative colitis. I've had it for 22 years..I'm very interested In your videos and channel! This is awesome.💙🙏❤
Having many international friends from all over the world with chronic illness, I've learned quickly that the term "disability" is seen differently depending on country and culture. It's sad to me that in many places it seems to clearly be associated with something so incredibly negative, that people get offended if the terminology in context of chronic illness is brought up. If we can change this by changing the terminology, or the way we use it, I'm all for it! In the end, in my opinion, if the term doesn't enable people or create more fairness, then it might be time for an overhaul.
Absolutely loved this video Hannah, and excited to see your pregnancy with stoma video when it's up! Discussing how your body knows to wake up naturally to empty the stoma in the night was so interesting - I bet this will give you a nice head start for night feeds/baby needs that some parents aren't so used to!
Because of my Lymphedema in my legs, I really now realise how free I used to be in my movements. I was very flexible and now I notice in how many different situations I used to use my abilty to move my body in any way I wanted. Especially with sex this can get frustrating and my pressure stockings also often make me feel unattractive. I used to be bullied and called a 'grandma' and I think that contributed to me feeling not sexy with my stockings (since society often views elderly people as sex-less).
06:25 someone turn this into a meme or gif please?! People who have sex need to see it. Hannah is truly a master communicator, using casual humour to get serious messages across
Love this video Hannah! Super informative, super normalising and super personal. Thanks for sharing. I feel equipped to try and make somebody with a stoma feel comfortable talking about it with me and I love that!
Your content is always so interesting, I'm learning lots of things, and I'm always curious to get your insight on these types of subjects ! Take care :)
I’m 24 and have recently had surgery to repair a severe rectal prolapse (totally out of the blue no real explanation as to why that happened) but it was quite severe! Thankfully I’ve had a long term partner throughout who’s been amazing and supportive! But, have felt a massive impact on my body image in relation to sexuality even since surgery, I’ve got new scars to navigate and my body doesn’t feel the same! Struggling to feel sexy these days and i guess part of that is identifying with my body has been ‘medicalised’ to some extent and I need to reclaim it as my own! 💛
I don’t think the word “disabling” avoids treating disability as a binary. Things are still either disabling or not disabling, so assuming the word came into common use we’d eventually form those same binary connotations for it. Totally agree with the concept in general - as a programmer, when I’m working on accessibility, I like to think of “person who just woke up” and “drunk person” and “person who has had a really bad day and just needs this one bloody thing to work.”
I was just watching this video and I didn't think it would resonate so much with me. I've been dealing with health issues since january, I got diagnosed with fibroids and my symptoms showed up very abruptly and were very debilitating (my periods got extremely heavy and painful to the point I couldn't leave my house, and I bled during all of march and most of April). I got an open myomectomy on April, my recovery was hell, and then a month ago I had to have surgery again due to complications from my first surgery. My sex life was heavily impacted from all of this, and I'm terrified about having sex again because I still feel so weak, and also because my uterus was chopped up twice in two months (yes, its as awful as it sounds). And even though I'm an able bodied person, this condition has been so disabling and I still need help to do things I otherwise couldve done by myself. Ive been with my partner for almost 12 years and he has been amazing during this awful process, and even though we know each other so well, I feel like this helped me to be more open with him about some issues I used to be more private about. But I feel like I've been in recovery for so long, and I miss having sex, but I don't know how to get the courage to do it again after all that happened to my body.
Looking forward to to the Stoma / Pregnancy video as my hubby and I have some questions 🙈 Like, will the baby pressing up against the stoma from the inside become a problem?
The sleep and Stoma topic was really interesting! I'm interested to see if that "waking up naturally" might even benefit the newborn stage.. with having to wake up in the night for another reason 😅
![[MV] A leap of faith...ความเชื่อใจครั้งสุดท้าย (From "Petrichor the series")](http://i.ytimg.com/vi/U1piZH2CNXA/mqdefault.jpg)
I really resonated with using the word “disabling.” I have migraine attacks and mental illness that fluctuate in frequency and severity. I don’t feel I should call myself “disabled” but my symptoms are often debilitating when they do pop up.
Yes! Me too.
Me too!
That's exactly how I feel with my depression. It definetly keeps me from functioning properly a lot of times and I feel severely hindered and impaired in life. I still never dare to call it a disability.
Totally agree!
This is the first time I’ve heard IBS mentioned as potentially disabling, and that was super validating, so thank you!
It’s not the only chronic physical health issue I deal with, but it is the one which has effected me for the longest in my life, and I find it’s often brushed off as not a big deal, when I know for many of us who deal with it, that’s simply not the case.
Same, thank you for commenting this Alex and to Hannah for bringing it up!
I felt the same way!! Instant smile on my face :)
Felt the same way. I have a very light version of IBS, but it also had a negative impact on my life, and for a little while I struggled with body image issues and my sex life.
Yeah, it’s not IBD, but if you have to plan your life around potential bathroom mishaps, it’s functionally similar. And at times it can definitely be debilitating. I love that Hannah is so inclusive!
I’ve had my IBS be so bad at times I wish I would’ve been able to have more treatment options even like a surgery just to get my quality of life back again.
As a medical student we’re obviously very much taught about ulcerative colitis through a medical lens, signs & symptoms, treatments, complications and all that
But your videos are actually really helpful for me in terms of what living with a chronic illness is like outside of hospital?Like until I saw these videos, I wouldn’t have even thought about what having sex with a stoma would be like for patients 🙈 it’s just not something we’re taught at all
Would LOVE more education for medical professionals about having these kinds of conversations with patients cause it’s important and we should be talking about it!
Yes! It sucks that patients are often the ones left to educate us because so much education is either superficial or through the medical lens. Even needing to rely on people willing to share their experiences on social media is unfortunate. (Though there is great research out there too)
I totally agree! I'm a children's nurse and would love to have had more training on this as thinking about disabilities in the long-term is a big part of what I help lots of families with (obvs, how we talk about the implications for sex will vary depending on the age of the child!)
I had a temp ileostomy in 2016 for Crohn's and as of one month ago now have a permanent one! I already feel so much more confident and healthy. It's great to see you raise so much awareness for IBD and Stomas. Thank you! :D
i cannot believe it’s been 4 years! if someone had asked me i honestly would have said about 2 years 😅 pandemic brain is hitting hard
Your discussion of disability not being a binary concept really resonated with me because I have scoliosis and had surgery to correct it, so now the majority of my spine is fused. This means that I can't do certain things like ice skate, horse ride, go on trampolines etc, but it is also disabling in day-to-day life because my back is often really sore, and I can't bend over very much which makes mundane activities like cleaning for eg harder. I don't view myself as disabled, but find my condition disabling
hi. Sarah. Why did they fused for spine??? why not just putting some metal in there and have a semi corrected spine?? I have scoliosis too and yes, I cannot jump high or run but daily things I can do. Just wondering.
@@zairabandy8695 hi Zaira, they fused my spine to stop it ever moving again x
I had spinal fusion surgery 10 years ago and just wanted to send some solidarity ❤️ I have found that developing abdominal strength has helped so much with back pain xx
Hi Sarah, I also had the scoliosis surgery and feel the same! I kind that have a normal life but also feel very disabled sometimes, it's confusing.
ps: sorry if the english is wrong
Didn’t really think about sex and a stoma for a long time having had one since I was 8. But I’m at uni now so it’s obviously a lot more present! This is an awesome video for me, thanks Hannah!,
I really appreciate your view on disability. I've always had a disability due to my chronic illness, but never felt right to call myself disabled? (maybe it's just internalized ableism..) This makes a lot of sense!
I feel the exact same! I have suffered from chronic migraines for the last 4 years. I know chronic migraine can be classed as a disability and it certainly had a disabling effect on my life but I don't feel like I have the 'right' to call myself disabled just because it's not constant or a "physical", visible disability. I'm sure it's internalised ableism as I would never think the same thing about someone else!
I usually call myself chronically ill, as on any given day, I will have had some amount of joint and/or nerve pain, and I can't stand for very long. Some things are certainly disabling though, like long lineups, stores and parks without public seating, and some washrooms. I remember hearing about the social model of disability, that basically says there's nothing bad about you, but rather that society doesn't meet your needs. Which includes a lot. I open cans left handed, and if I'm given a right handed can opener, even that can be disabling if my only food is in a can. Thankfully the only time that particular situation happened was in middle school and one of the teachers helped me out. But it really does put a different spin on things, and I like that a lot with my allergies and ADHD as some environments work for me, others are a struggle without meds (most of which I am allergic to). However, my bones not staying in place is definitely something wrong with my body, so I do tend to use the term disabled for myself now that I'm coming to terms with how my weird bones affect me.
I never call myself disabled even though I have ADHD. Sometimes I just make up excuses like I’m forgetful or I’m clumsy, because ppl will just look at me like I’m making an excuse for mistakes I make.
Thank you for the video, I have had a colostomy for 11 months now, I have stopped trying to date or find someone in my life Due to feeling self conscious. Thank you providing me a diffrent view.
My surgeon and the stoma team were very sex positive before and after surgery. In addition to talking about things like supportive lingerie, they taught me about safety. Before I even had surgery the stoma nurse explained that some people enjoy sexual contact with their stoma in their relationships, and that you can get an STD from sexual contact with your stoma. They showed photos of herpes on the stoma as an example and taught about safe penetration. While I don’t engage in that sexual contact I am really appreciative that they are proactive about that. Amongst the medical community it is usually ignored until it becomes a problem because it is an uncomfortable subject.
I would like to say thank you to you Hannah last week it was my 3 year anniversary of getting my stoma (called puff) and it was very traumatic I was diagnosed with ulcerative colitis and one month later I had surgery and I was only 16 at the time but it was your videos that helped me through and educating me on the condition that had been thrown at me but also gave me the confidence to get into my first relationship and your video guide me and made me feel so comforted and reassured that my stoma and my body is normal so thank you so much
As a med student one of the reasons why I am interested in gastroenterology because of your story. I am very glad to know the side of the patient in dealing with stomas and UC.
Hearing you talk about how your relationship with Dan really helped is interesting to me. I broke my neck a couple of years ago age 22 and somehow in the midst of nearly dying ended up getting together with someone who I'd cared about deeply for a long time before. I couldn't shit normally, I had a catheter, I was suddenly paralysed from the arms down, a full time wheelchair user for the rest of my life and it could have been a really tough time. BUT, like you, I'm a pretty adaptable, open, upbeat person and to be honest, being disabled never really felt like a big deal to me. I was once private. And fiercely independent and now I wear my insides in a bag around my leg and tell strangers that I pee from a tube.
But these are facts.
And I own them.. And I know they hold no shame, because when I look at another person, the things I want to know are so much more than how many steps they've taken that day or when they went to the toilet. My dreams are bigger than my body and my self worth doesn't live in my legs.
Plus, disabled people are pretty fucking funny and once I decided life was too short to give a shit and continued to act and joke about my piss bag as it just being a normal bloody tool for waste elimination or peed all over my friends floor- the people around me proved they didn't give a shit either (queue my university friend trying to gymnastics my leg in the air to empty my bag over a non-accessible loo at a climate change protest while we pissed ourselves laughing- okay maybe the pissing part was just me).
But I think having that relationship- not even going into hospital in one (actually, id literally been on a Tinder date when it happened... don't advise midnight spontaneous swims in a duck pond 😅🙈) did really help. Someone driving across the country, coming to patient ed lectures about bowel care and pressure wounds and making out in a darkened hospital corner until security guards outed us: it showed me that I was still loveable and sex could still be fun. And so when we broke up and I moved to Scotland to pursue my Masters without him, I felt confident in the dating world- though, given my Tinder history, maybe I should try Bumble 😂😂
Anyway thank you for sharing. What you do is important.
You're great.
I had dental surgery a little while ago and the doctor asked me if I had a boyfriend (I’m gay…lol) but I was single (ish) and I said no. Several days later, I realized I had no idea when it was safe for me to have oral sex (or even kiss!). It was such an awkward experience and I was NOT going to call my surgeon and ask. I felt like maybe if I had said I was in a relationship or he knew I was gay he might have given me any bit of information (maybe not though). I’ve also had a nurse ask me (during an std screening where I mentioned a breakup) what the boy’s name was…and I had to say “um, well, she’s a girl…” it would be GREAT if doctors brought up how health impacts sex more…
I have had my colostomy since 2019 when I was 22 due to bowel cancer (I’m okay now!) and I can honestly say you are the reason I didn’t feel so scared or daunted by it. I’ve been watching your videos for years and watched your journey way before I was even ill. When I was told I needed to have one, all the doctors were making it sound so scary but I was just sat there like “hey I know all about stomas & what they involve because of Hannah!” 😊
Thank you so much for spreading awareness and talking about them because there’s still the perception that it’s only old people who have stomas and that is so not the case!! Seeing someone my age with one and knowing I could still be confident & enjoy life helped get me through the most awful time ever.
Thank you Hannah, you are an inspiration ❤️ I’ll be forever grateful.
(Also, I have the exact same crotchless bodysuit thing as you and it’s amazing!! Definitely makes me feel much more confident and takes away the embarrassment of the bag flapping around or making crinkly noises lol.)
I very much relate to you saying her discussing stomas made you less afraid. I have been watching her for years as well and now my mom is getting a stoma so I also feel less afraid going into it and helping her.
Thank you for sharing all this info and experiences of living and adapting to a stoma and or disabilities! I had pre colon cancer surgery and have and internal pouch. Someday will have or choose to have surgery to go to a stoma! I can not put into words what a great video this is for me.
My granddaughter aged 16 has just had Stoma surgery about 6 weeks ago. Hopefully her quality of life is like yours
You are such an inspiration and open. Making us feel more positive watching your videos.
I just want to say that I have IBS and mental illness and consider myself to be disabled. I've struggled a lot with identifying that way because people don't often think of it as a disability, but it has definitely severely limited my ability to fully function in the world and has required accommodations in school and work
If using the term disabled helps you cope with and understand your illnesses, that's great!!! I find it incredibly helpful to view myself as disabled (I have dysautonomia and mental illness) and, as you mentioned, it was hard to learn to identify myself that way but it's has helped so much now that I'm more used to it!
Oh my goodness wow! I can’t believe it’s been 4 years. As an able-bodied person this whole journey has been so informative, interesting and beautiful to see you navigate. Thank you for sharing as always x
Hi, I'm Liz and I'm a second year medical student and I've just had a subtotal colectomy leading to a permanent ileostomy after a severe flare of my Crohn's disease. I just want to say thank you so much for your videos on stomas, on food, sex, relationships and surgery. I've only been out of hospital for three days, so everything is still pretty raw and new, but your videos have really helped me and given me hope. Thank you so much! ☺️ All the best,
Liz
I have always felt like my mental illness was truly disabling at times. Thank you for mentioning it if only briefly.
My meds for mental health have made it impossible for me to orgasm! Luckily they also affect libidio but I still feel hard done to
I’m deaf (I wear hearing aids) and I loved the conversation are disability! it is not talked about enough so I’m glad your videos are broadening people’s perspective!
This is such a great video. I've been disabled due to chronic illness since I was 18 but didn't feel I had the 'right' to that word until my 30s. Now I'm proud to say it and for the strength it's given me. I know watching this back when I was first ill would have helped that. So thank you. Also, I appreciate your comments about orgasms and core strength. Sometimes I just don't have the physical strength for an orgasm no matter how good the sex, and it's so frustrating! I'm glad to know I'm not alone in that.
I love what you're saying through all of this. I had breast cancer at 24, I had a mastectomy and 2 years later had DIEP flap reconstruction that used my stomach tissue and recover from that was extremely disabling for obvious reasons but sex has always played a huge part through my whole recovery. I had to learn to love my body again and self love was difficult for me for a while but I got it back and now I love my body and my scars, I've found a new partner since and he loves my scars too. I still think we are all a bit too prudish about sex for some reason but we need to normalise speaking about it and all the different things around sex. Keep up the great work and thank you for sharing
4:00, thank you for mentioning the spectrum. I have celiac disease and never thought of it as a disability until it was on the list of disabilities when I was applying for a new job. It does impact my life every day, and some days I feel like I can barely function if I’ve been glutened but it doesn’t feel like a disability.
It’s a very interesting thing to me I guess
There is a great podcast called "OT After Dark," and they have an episode or two where they talk about accessible sex toys specifically for people with disabilities! They brought on the head of a sex toy company for an episode and it was excellent. Nice to see that people are talking about it. Also, in Occupational Therapy, sex is considered an activity of daily living (ADL) marking it as one of the primary activities you need to survive. Pretty cool if you ask me!
Hey! Love OT after dark. There are a lot of great workshops put out by sex shops too - they often have a better grasp of it than health professionals (though they also have a certain assumption of folks being ok with the topic being breached so that can move the conversation forward more quickly as well).
Also related for folks unaware of OT. The removal of (consentual mutual) sex is occupational deprivation/injustice. So gaining access to sex in settings like prison or group living homes is activism and (when done well) is a point of advocacy for OTs.
Vaguely related, the removal of sexual language (and swears) from adult communication technology poses a similar barrier because a person loses access to the tools required to communicate their desires.
People with disabilities are also more often than not people who are sexual! Access to sex, sex communication, sex tools, and safety in these areas and communications is important.
I had a temporary ileostomy as an infant - love seeing you happy and is so interesting to learn these things
This has been such an eye opening interesting video! So much of this has resonated with me. In 2021 I had a miscarriage and I now feel this disabled me from having sex but not straight away, we pregnant with our rainbow baby and then I was too scare to have sex until I was about 20 weeks just in case anything happened, I wouldn't even masturbate. I never would have thought of it this way until I watched this video and it has definitely helped me be more empathetic and understanding of other.
I’m so glad you mentioned IBS!!! I’ve found IBS for myself can be deeply debilitating.
1.)It’s required me to be very careful with what I eat and when I can eat. And it’s very difficult cause even if you do an elimination diet go try to see what is a trigger food or try to follow the fodmap diet it doesn’t mean everyone has the same trigger foods which can make it more difficult to figure out why your sick. I’ve found it’s worse when things have multiple ingredients cause then I have zero idea.
2.)I have to really monitor how medications can affect my IBS to make it worse. And this sucks cause many pain meds are bad triggers for most people with IBS. So if you need them for something else it’s always a trade off- being in pain from one thing or a bad IBS flair up.
3.)This is made worse by the pain with IBS. Between the bloating, the tenderness of your stomach, and the spasms and cramps you can feel it can be so bad it makes me nauseous( and that’s taking medication specifically for my IBS). And that’s on top of having like the worst poop of a normal persons life, every day.
4.)How close IBS is tied to overall mood also means whenever I really stressed my IBS is worse which makes me more stressed.
5.)It can be really time consuming. You have to often prepare a lot more, like I always make sure bathrooms are close by wherever I go, and usually bring a extra pair of pants and underwear wherever I go. The time I’ve spend in the bathroom everyday alone, events I’ve missed or had to leave early, or even just having to spend more money to get good toilet paper just stinks.
6.) as a AFAB person, my IBS makes my period worse.
7.)I have also because of being AFAB and having IBS had a doctor dismiss my any pain in my stomach as just IBS. I had to go to the hospital 5 times for over 12 hours each for what I thought was a gallstone (east coast Canada) to finally demand a doctor run further testing cause I found out that the test that the test that X-rays only showed some types of gallstones when there is enough calcium in them, and if they don’t they won’t show up. Low and behold when I asked for a ultrasound I had a gallstone the size of a tennis ball and I was close to it exploding. Long story short the medical system sucks when it comes to taking a lot of people health seriously and many doctors would rather have a ego then say they are unsure and consult someone else.
Like I have other chronic conditions and disabilities but it’s so frustration that something that can be so debilitating, life altering, and impactful on my life and most doctors could care less.
I don't have IBS specifically, but I have a lot of food intolerances, and it was a pain to figure out. I couldn't even go on a date properly before I went through a very long process of finding out what bothers me. The joint pain and nerve pain is still a bit of a mystery. I'm also in east coast Canada, and waiting for a connective tissue specialist, which is taking a while.
I find during PMS, my joint pain and hypermobility gets worse (more likely to partially dislocate something), and when it comes to going number 2, my insides are more likely to fall outside, even if I'm not constipated, which literally stinks. I've been to so many doctors and tests, private/paid and public, and yeah, it can really affect the mood. Year 6 of complaining about pain even after going gluten (and a bunch of other stuff) free, and still not much help other than physio for the most hypermobile joints. Frankly, between trying to finish my degree, and all the medical appointments I have, I'm too tired to be intimate most of the time, but I'm so glad this conversation is happening, as I do plan to get married, and navigating that with my partner is definitely something both of us have talked about.
I agree so strongly with all of this! IBS needs more validation!
This is such an important topic and I’m so glad to see it being talked about more openly in these kinds of spaces and hopefully more soon in the general mainstream conversations as well! I think one thing I’ve really learned from my experience with disability is how much the treatments like medication can really have an effect on peoples sex life and in my experience it’s never seen as a priority to check in on that by doctors even when those side effects are fairly well known and commonly cause difficulties in that area of life. I definitely wish particularly psychiatrists and gynecologists would ask if there are any concerns there as a routine thing since mental health meds and hormonal treatment have the potential to really change things.
I had to fill in a survey during cancer treatment that asked all kinds of things about sex and body image etc. well intended but very very poorly executed, full of assumptions with the result that no meaningful data could be gathered. I was then accidentally part of a research group, an off shoot byproduct of which would have been a better survey. But it didn’t get funding. So some medics do realise they should be doing this.
Yes! It took me years to finally ask my psychiatrist if being on various antidepressants since the age of 12 could be the reason I had never had an orgasm, and if anything could be done about it.
As a single 20 something who’s had a stoma for a couple years, I was terrified to show people and tell guys I was talking to about it. But apart from general curiosity questions no one’s been phased by it. Even ons who I’ve not mentioned my stoma to beforehand.
I second Hannah’s comment about stoma nurses being the one to bring up sex after stoma surgery, especially even with people who aren’t in relationships!
The idea that disability is not a binary is so eye-opening for me! Having had several leg surgeries after an accident, for a year I was using crutches or a cane to be able to get around. I even had on of those "please offer me a seat" badges for the tube but I often felt like a fraud, thinking "but I don't have a real disability!" even though my mobility was severely limited for a long time. I am very grateful to be fully mobile again, but I realize now this shouldn't discount the struggles I went through for that period of my life
I am glad that you have a good view of disability. I was the epitome of perfect health for my whole life. Got COVID at work due to negligence and I ended up with long term symptoms and was put on "temporary disability".
I sent one of my clients your playlist who had colon cancer and was having a REALLY hard time coming to terms with their stoma, colostomy bag, and sex. I moved so I don’t see them anymore, but I hope they subscribed and see this one too!!! Your openness is so helpful for others and I tell everyone I know about your channel! 🖤
I love what you said about a "disability" not always being permanent.
I had an accident where i badly injured my knweethat made me have 3 surgery's in 6 months and took me a whole year to recover. Still cant bend it properly or rest on it.
My partner and I had to adjust and re adjust a lot during that time.. but that was ok.. made things more "interesting"
I remember watching you through being so sick. It was so hard to see you that way. I am SO Happy to see you today, well, married, soon to be mother, and just HAPPY!!!!
I very much appreciate you speaking about sexuality as it relates to disability. I find that society at large will often brand those with disabilities (especially those of us with neurological disabilities) as either sexless or incapable of responsibly exploring our sexuality. I’d love to see more videos from you exploring sexuality in the context of disability and busting stereotypes.
As someone who went on disability assistance mainly for mental illness, it took me some time to identify with the term disabled for myself (though being Certified Disabled by the govt certainly helps validate that). A couple years later I was diagnosed with Crohn's and by that time I'd already embraced being disabled, and have found the community of disabled folks/spoonies invaluable.
Mutual aid, solidarity support, awareness about access needs and neurodiversity, sharing and creating resources, etc. It's been built unfortunately out of necessity and lack of support/resources from ablebodied folks, but is full of creativity, ingenuity, compassion.
My husband has a stoma for just over a year and when he first had his surgery your videos are the ones that actually gave me some insight as to what this actually is and what will entail. I remember having seen your story and your experience, it really helped me cope with that horrible situation. I think it's really great that you're so open about it. Having a stoma or any kind of disability is nothing to be ashamed of. This is something that happened to your body and as you said so nicely, it's one of the changes your body has undergone in the course of your life until now. Everything changes and so do our bodies. We should embrace it, learn to live with it and educate our friends and people around us as much as we can
I had ACL surgery right when I was starting a new relationship and that was hard and weird with sex. Took a shit ton of communication and trying new positions frequently. I also (most likely, not diagnosed) have IBS and that definitely affects my sex life. There are many times where I'd like to be doing stuff but my stomach is too upset too.
The biggest thing I've learned from being specifically a kinky disabled person, is to negotiate what happens if a flare up occurs during a scene. For instance, I have spells of passing out and it happened during a scene once. I was unconscious, so I was unable to safeword. But my partner knew me well enough and recognized the signs I was going to faint and stopped the scene.
The way you outlined disability really resonated with me.
One thing I’ve learned about sex, and I think you’ve talked about this, sex isn’t always about penetration.
Really love the point on disability not being binary. I have chronic illnesses that massively disrupt my life but I’ve always struggled with feeling like I don’t have the right to call myself disabled because I (sometimes barely) manage to work full time and my illnesses aren’t highly visible. I’m learning to embrace identifying as disabled more though.
+
4 years! Wow, feels like I watched those videos only 2-3 years ago. I guess that is because 2020/1 kind of didn't exist.
hahaha yeah so true 😅
Can affirm that disability in romantic antics can teach good awareness of some basics that'd be useful to anyone, like how to plan and pace the antics around energy levels, do regular check-ins as to physical comfort, recognize how much of people's ability and engagement in said antics is due to the situation (more than anyone's individual skill or drivenness or somesuch), etc.etc
I had an iliostomy for 2 years in 2004 reversed in 2006 after a ruptured appendix. i coped with it well because i was lucky to survive the many complications from the appendix rupturing days before me being treated. I always empathize with people with them since.
my mom might need a stoma one day (she had colon cancer, she's all good now) and I appreciate how informative and open you have been about it! If she does need one I will certainly show her your videos!
Time flies I can’t believe I’ve been following you for so long at this point!
what counts as disability is always a weird question. I consider myself disabled because I have a condition that affects me in more mild ways but is typically more serious in some other people. I have a sense that there’s strength in numbers and unity, but I never know if it’s helpful to others or not. I love hearing intracommunity dialogue on this kind of thing
As someone who doesn't know anything about ileostomies, I appreciate your openness and honesty.
As a medical professional I can say I love that your videos exist and I have recommended your channel once to a UC patient who was about to have a colonectomy - and I really think it helped her.
So much so good advice and great insights, thank you very very much. And happy anniversary :)
I wish my Dr had recommended videos like this. I was so lost. Being diagnosed with rectal cancer at the beginning of the pandemic having the ileostomy and not able to get the bags to hold etc. Was feeling like if it would have been permanent I honestly don't think I could have gone on. A lot of it had to do was lack of information and support. I was able to have the reversal surgery alomst a year later. That in itself is a whole new ball of wax. Poop still not "normal". Just let me say a bidet and perod panties are a godsend. Because of all the other issues and my husband's diabetes sexual relations wasn't part of my life. I so admire your honesty and sharing of your journey. Agian I know my journey would have been not as daunting if my ostomy care nurse had recommended videos like yours. Thank you
I really love and appreciate your videos! I have worked for 16 years as a nurse before I became disabled myself. As a nurse your open sharing was very helpful to be able to understand my patients better as I had lots of patients with a stoma. Interestingly I have also come to see that most nurses/doctors won’t speak about sex with their patients when they undergo changes (in whatever way). For me it was always important. During the nursing education it was a part we learned. And I felt it is really important to speak openly about it - if the patient wants to of course. But also just to open the space to let them know there is a person they could talk to if they‘d want to. When I worked as a nurse in a neurological Rehabilitation clinic I had many people ask me about their sex life after they became paralyzed - young and old, mostly male. Now as a disabled person myself it’s a whole different ball game. And I wished for myself that professionals could be more open and helpful offering resources for example.
Medical professional here . Yesterday I recommended your videos to one of my patients who is new to having a stoma 🤗 Love your content
I appreciate the whole video, like you said, anyone could become disabled at any time, so many people have disabling situations.
But my favourite part you mentioned was about how pausing sex is okay and normal.
Cognitive and sensory issues in disability and sex are really important too! There are ways to compensate or adjust while still finding sexual pleasure or enjoyment even with these difficulties. But if you go online for advice it may end up leading to being shamed for not being up for a "normal sex script" act or process, which is frustrating.
Sensory is a big thing for me. If even one small thing in my surroundings is the least bit bothersome, I'm completely out of the mood. Like oh, your phone vibrated on the shelf? I'm out. My partner and I are waiting until we can have our own home due in large part to that reason. Some days even hugs are a challenge, so we definitely have to communicate a lot, and often talk about it when I'm having an easier day and not already stressed.
Epilepsy has taught me a lot about the impact of disability on the other person in the relationship.
I’ve had seizures during sex but as I mostly don’t remember my seizures at all, I think they’ve been significantly more traumatic for my partner than for me. After it happening during oral sex I noticed my partner hadn’t initiated that again for a few months. It wasn’t til I raised it that he realised he was anxious of it happening again. I can imagine other couples might have struggled to see the other person as a sexual being at all for a while after that kind of experience.
More generally, in periods where I’ve been unwell it’s been hard to balance getting the support I need without turning my status as a girlfriend into one of a patient. I’d be so interested in your thoughts on navigating these dynamics as a couple.
About the orgasms requiring core strength: So right. I have been doing core-work for two years now because of a back problem. Let me tell you.... Core-work is not only beneficial too alleviate back-pain... :p Great video, Hannah!
Edit: Just a note. Putting the main take-aways on the bottom of the screen is not very useful when you use the subtitles in YT. I'm having trouble with my hearing, and I just noticed they overlap when I watch the video with subtitles.
My brother had ulcerative colitis and he refused to do the surgery- we had to respect his decision. He died age 30. It's a painful topic for me but an important one.
So sorry for your loss
THIS WAS SO INTERESTING AND RELEVANT. I clicked on it because I knew there would be surprising things to learn that would be relevant to me, which is in turn because I'm familiar with your content - had I not been familiar, I think at most I would have expected it to be interesting, but not relevant. Which proves your point that disabilities need to be included in discussions more!
I can't believe it's been four years! I was scared for you but love your attitude around it all now and have loved seeing you grow x
Hi Hannah, thanks for chatting so candidly about sex, relationships, and disability. It's a great message to get out there. You are absolutely right unless you've had some sort of experience, it's not talked about enough and unfortunately, it's still got a huge stigma attached. Years ago I worked for a charity supporting young people with disability. I was asked to edit a book giving guidance to life with a disability. Surprise, surprise, there was not even an inkling of a mention of sex. So, I ended up writing a chapter. I also ran workshops on it (with young people and their parents - separate workshops!). Nowadays, as an inclusion specialist, I continue to share your passion and have always been very open and encouraging communication around sex and the intersectional individual. Anyway, it's fantastic to keep the conversation open. Thanks again. Sarah
Wow 4 years man.. I remember when ifound you and I felt you had such value in your opinions and who you were. Then this happened and to see you grow along the way and the process. I really can't believe its been 4 years, that means I have been watching and listening to you for about 5 years. Cool to see.
You are great, Hannah. It's obvious how you want to help people. I love the way you talk about everything so openly to help others with their struggles. I really admire you. Watching your videos always brings a smile to my face. Thank you for everything that you do.
This video is so incredibley well articulated, so much good advice, with real examples and I think more people need to know these points. Thank you for sharing your experience. Point 8 where you talk about communication being left out in relationships that dont have communication as a neccessity is so tragically true too
hi !! i'm a recent subscriber to your channel (my partner recently sent me a lot of your informative videos on sex & relationship oriented things), and i just want to say, thank you so much for also sharing in regard to your stoma and just bringing awareness to your health condition !! my grandmother has a stoma as well (hers for diverticulitis) , and i can remember years ago when she got it, and just the huge adjustment it was for her. it's just very refreshing to see someone making content in reference to having one.
The seeing yourself as disabled versus viewing it as something that disables you hits home. I have hypersomnia due to an accessive need of sleep. It is not recognised as a disability, but it really can impact my daily life. Often I am just a walking zombie not able to really process anything. Which is funny because I like to work as a researcher. It also heavily affects my relationship. Having enough energy to even just hold eachother can even be a stuggle
"It is not recognised as a disability" is meaningless. There is no list of disabilities. If it impacts your life in a way that you find disabling, i.e. it means you can't function the way a healthy minded able-bodied person can, you have every single right to call it a disability and call yourself disabled (although of course you don't have to if you feel those terms don't serve you). I hope you're doing as well as possible at the moment ❤️
So much yes on doctors bringing up sex on their own! Even when I got my IUD (at a GYNO for fuck's sake) I wasn't really told what kinds of sex would be safe immediately after the procedure - obviously they told me not to have penetrative sex right away, but what about oral? What about finger stuff? Like jfc this is a literally a device you get put into yourself because you want to have sex without getting pregnant...
My partner has chronic fatigue, and I’ve realised that sexual currency (touching each other in ways you wouldn’t other people) is so much more important, than the amount or type of sex you have
Thank you Hannah for this video & raising awareness 😊 someone asked me how long I'd had my stoma recently & it took me a while to work it out (7 years) because its just part of my life now 💁♀️ I was nervous how having a bag would affect sex, and even bought bands to go round my tummy and nighties etc to cover it, but honestly as soon as I found the right appliance for me (shout out to Sensura Mio bags 😅), I found I preferred being in my birthday suit! 🤗 so yes, great excuse to buy cute undies & experiment, but also absolutely possible to go without. Happy stomaversary Hannah xxx
I have a stoma and what I learnt was positive ie that my husband and I had the ability to love and adapt. Thanks for making this video.
Going through cancer treatments right now, I definitely feel the "disabling", even if I'm not disabled per say. The fatigue, lack of enthusiasm and love towards my body, and just, fucked up hormones in general really has changed the way I feel about sex (don't feel like initiating it and don't often think about it or want it, but when into it, enjoying it). My partner (of the last 15 years) sometimes worry because I never make moves on him first and thinks he's not desirable anymore, but I know it's the situation we're in and I often feel like I'm failing as a partner. Add that to having young kids and being in a pandemic, and you have a perfect recipe for an unsatisfied couple 😬
I have chronic conditions that vary a lot, and communication is so important. Some days I'm hypersensitive where every touch hurts, and I can't even hug my partner, while other days I'm really emotional and can't do much of anything but hug my partner (or a plushie if I'm by myself). I am asexual which has led to all kinds of conversations, but with my disabilities in particular, it's all about consent in the moment for everything. Hugs, kisses, being picked up, whatever it is, can affect me in different ways (usually affected by weather and hormones), and knowing for that particular moment what I'm able to handle and would like, is key.
I basically have slippery bones, I'm getting tested for a connective tissue disorder, but I get dislocations or bones getting stuck, a lot. Anything from turning my head too fast, to sleeping wrong, or even walking without compression socks can sometimes cause joint pain, and I have to be very straightforward with knowing what my limits are for a given day. I like big hugs, I like having my partner lay on me, but sometimes those things can pop a shoulder partially out, and I have to do a lot of very careful stretching to get it back.
I also have sensory issues. Getting migraines or twitches from scents, sounds, fabrics, or certain lighting, so I haven't felt comfortable enough to do anything too intimate, but my partner and I want to get a house and get married, then we can control our area to meet both of our needs. Like waiting for marriage out of necessity. I'm sure things will still take time, and lots of trying things to see what works and what doesn't. I'm still learning what my triggers are, and what are safe things I can use even when I'm having a bad day.
I have a chronic pain condition, it’s as a result of my nerves just having increased sensitivity. So sex has always been different for me. But I think it’s like for everyone else. You find your groove, communicate with the people you’re having sex with. Try things that are within your sphere of maybe. I feel like it’s given me the personal mindset where I’m comfortable saying if I don’t want to do/try something. Because some things I can’t do and that’s given me a difficult skill set to learn.
The point about disability not being on a binary is so interesting, I’m type 1 diabetic and for years I would NEVER have considered myself ‘disabled’ because I felt like I didn’t fit in that box but this illness can most days be manageable and some days absolutely floor me and ‘disable’ me, especially in short bursts of time
Not a medical professional but I would like to say a big thank you for your videos, one time I was involved in a situation where a lady was having a flare up of her colitis and she had a stoma. I was with her until eventually an ambulance came and having seen your videos in the past, it didn't feel as foreign to me as it might have done if I'd never learned about stomas, why people have them and what they do etc.
Hi Hannah! I really liked the video! I have had diabetes type 1 now for almost two years. I still feel like it's completely new sometimes and most of the time I feel pretty negative towards it. Like my body kind of betrayed me. Although these videos cover you're experiences with a stoma, there are a lot of things for me that translate too my diabetes. The way you talk so open and positive about it makes me always feel a lot less stressed about my diabetes and makes me feel like I will be able to handle it. So thank you for that!!!
My partner left me shortly after I was diagnosed with ME/CFS however he was my primary emotional support and caregiver through my 2 first years of the illness, seeking diagnoses and dealing with the trials and tribulations of a chronic illness.. it defo had an impact on our sex life/relationship... In that our primary concern became physical and emotional wellbeing over sexual wellbeing- as we couldn't do that unless we were in a 'gd place' mentally/physically which took alot of work. We didn't acc separate bcoz of my illness.. but coz our life paths were diverging. Has made me think ALOT about sex & disability tho...
As someone with rheumatoid arthritis, I am grateful for any sex educator for including disability in their discussions. It is so tiring to have to do that for every partner and having somewhere to refer them is nice.
I guess I have learned the importance of anti nflammatories before sex, making sure I am not holding positions for too long, and that people only get so much hand work from me before I have to give up from pain. Work arounds like edging (rests!), more mouth stuff and stopping to make out and reset up are fine. And that it is okay to make this clear and not just suffer through.
The hidradenitis supprative has peoved to me that people can and will ignore a giant bleeding hole/scars if it means they get sex. 🤣
Agree with you on what counts as a disability/disabling.
I would describe disabilities as occuring on a spectrum. Just as neurodivergence is described as a spectrum it doesn't mean one person is more or less disabled then another, it is not a single linear spectrum but a series of areas of which mobility is only one. People can be affected in more than one area.
Obviously you can be fully mobile and still disabled in other ways but I think the idea of 'blue badges' and the common symbol of a person in a wheelchair bias many able people's image of disability to be something that you can see. Hence the growth of education around invisible disabilities
While I completely agree with you that certain conditions and situations can disable people (I don't have the formal IBS diagnosis yet, but that's basically only a formality after almost 9 years of living with it and it's been debilitating), I'd also advise anyone to still be careful with that phrase. In Germany, a big organization that positions itself as an advocate for disabled people had an ad campaign that featured a slogan along the lines of "people don't have disabilities, they're being disabled", which was criticized by several disability activists that rightfully pointed out that even if all of society was suddenly inclusive and barrier-free, they still had their conditions and their disabled bodies (e.g. that they were still deaf, even if everything was subtitled). Disability is a defining trait for a lot of people, so phrases like this sometimes can sometimes do more harm than good. Still, I really appreciate you bringing this subject up, it definitely needs more attention!
I know this is kind of off topic, and you may already be familiar with it. A good example of toys and disability in popular culture is the series Grace and Frankie. Slight spoiler: Grace, an older woman, injures herself while using a vibrator; this turns into a whole business geared towards older women. This is just one of many plot points in a show primarily about two very different older women living in a house together after their husbands divorced them to be together.
Since the show brought the issue of disability and toys to my attention, it seemed worth mentioning.
I randomly thought about this today & wondered how you were getting on with your stoma... Came to check & this video was uploaded 6 hours ago. Magic!
I feel similarly about disability being a spectrum. I recently got diagnosed with autism which makes me legally disabled (I receive disability benefits and supports) but for most of my life I had no idea I was "disabled", just that lots of things were confusing and difficult. I put a lot of my difficulties down to depression and anxiety and the side effects of the medication I was on, but it just wasn't the full story. It probably puts a dampener on my sex life too because of how sensory sensitive I can be depending on the kind of day I've had
Your awesome! I have 21 years, life still rolls on. "The sun will rise tomorrow "
Wow I'm so glad I just found you ! I also have ulcerative colitis. I've had it for 22 years..I'm very interested In your videos and channel! This is awesome.💙🙏❤
Having many international friends from all over the world with chronic illness, I've learned quickly that the term "disability" is seen differently depending on country and culture. It's sad to me that in many places it seems to clearly be associated with something so incredibly negative, that people get offended if the terminology in context of chronic illness is brought up. If we can change this by changing the terminology, or the way we use it, I'm all for it! In the end, in my opinion, if the term doesn't enable people or create more fairness, then it might be time for an overhaul.
Absolutely loved this video Hannah, and excited to see your pregnancy with stoma video when it's up! Discussing how your body knows to wake up naturally to empty the stoma in the night was so interesting - I bet this will give you a nice head start for night feeds/baby needs that some parents aren't so used to!
Also really enjoyed the use of the term 'disabiling' which I 100% identify with having endometriosis and IBS!
Because of my Lymphedema in my legs, I really now realise how free I used to be in my movements. I was very flexible and now I notice in how many different situations I used to use my abilty to move my body in any way I wanted. Especially with sex this can get frustrating and my pressure stockings also often make me feel unattractive. I used to be bullied and called a 'grandma' and I think that contributed to me feeling not sexy with my stockings (since society often views elderly people as sex-less).
06:25 someone turn this into a meme or gif please?! People who have sex need to see it. Hannah is truly a master communicator, using casual humour to get serious messages across
Love this video Hannah! Super informative, super normalising and super personal. Thanks for sharing. I feel equipped to try and make somebody with a stoma feel comfortable talking about it with me and I love that!
Your content is always so interesting, I'm learning lots of things, and I'm always curious to get your insight on these types of subjects !
Take care :)
Your teaching a 50 year old man somethings new...Brilliant stuff Hannah! All respect!
@hannah_witton33 ??? 🤔
My mum had a stoma And it was called Henry because my dad thought the bags looked like hover bags
I love this video Hannah, I have chronic back pain and feel similarly about this feeling disabling due to how much it affects my day to day life.
I’m 24 and have recently had surgery to repair a severe rectal prolapse (totally out of the blue no real explanation as to why that happened) but it was quite severe! Thankfully I’ve had a long term partner throughout who’s been amazing and supportive! But, have felt a massive impact on my body image in relation to sexuality even since surgery, I’ve got new scars to navigate and my body doesn’t feel the same! Struggling to feel sexy these days and i guess part of that is identifying with my body has been ‘medicalised’ to some extent and I need to reclaim it as my own! 💛
I don’t think the word “disabling” avoids treating disability as a binary. Things are still either disabling or not disabling, so assuming the word came into common use we’d eventually form those same binary connotations for it. Totally agree with the concept in general - as a programmer, when I’m working on accessibility, I like to think of “person who just woke up” and “drunk person” and “person who has had a really bad day and just needs this one bloody thing to work.”
I was just watching this video and I didn't think it would resonate so much with me. I've been dealing with health issues since january, I got diagnosed with fibroids and my symptoms showed up very abruptly and were very debilitating (my periods got extremely heavy and painful to the point I couldn't leave my house, and I bled during all of march and most of April). I got an open myomectomy on April, my recovery was hell, and then a month ago I had to have surgery again due to complications from my first surgery. My sex life was heavily impacted from all of this, and I'm terrified about having sex again because I still feel so weak, and also because my uterus was chopped up twice in two months (yes, its as awful as it sounds). And even though I'm an able bodied person, this condition has been so disabling and I still need help to do things I otherwise couldve done by myself. Ive been with my partner for almost 12 years and he has been amazing during this awful process, and even though we know each other so well, I feel like this helped me to be more open with him about some issues I used to be more private about. But I feel like I've been in recovery for so long, and I miss having sex, but I don't know how to get the courage to do it again after all that happened to my body.
That video was so well done. You make many interesting points and really make me think.
Looking forward to to the Stoma / Pregnancy video as my hubby and I have some questions 🙈 Like, will the baby pressing up against the stoma from the inside become a problem?
it is amazing that you represent people with a stoma so amazingly
The sleep and Stoma topic was really interesting! I'm interested to see if that "waking up naturally" might even benefit the newborn stage.. with having to wake up in the night for another reason 😅