How Self Diagnosing Saved Me · Endometriosis Surgery & Neurodivergency, ADHD, Autism
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- เผยแพร่เมื่อ 18 ต.ค. 2021
- Living with worsening chronic illness is not for the faint of heart. Especially when the medical realm doesn't make it any easier for women like me, who suffer with Endometriosis, to navigate seeking treatment and diagnosis. I've struggled with the chronic illness and chronic pain my whole life, yet I am only now getting the diagnosis and treatment I need for it at the age of 25 almost 26. And what's even more disheartening is....I am one of the lucky ones. 25 is considered a pretty young age for being diagnosed and receiving surgery for Endometriosis. Too often, women with this chronic illness will go their whole lives suffering in silence with no glimmer of hope, knowledge, or guidance in sight. This is absolutely unacceptable. Even though I finally got to the point of getting my Laparoscopy & Excision surgery scheduled with an Endometriosis specialist, it took me 2 years of actively pursuing this exact result to finally get to this point. And by the tie I found myself with a treatment plan, I was already broken down and gaslit into hopeless defeat.
Should I be surprised that I've faced very similar experiences within my mental health journey and getting the diagnosis I need to provide a sense of closure and deeper understanding of myself? Perhaps the answer is no, sadly. I've been talked over, misunderstood, patronized, and misdiagnosed every single time I sought out help from a professional in some capacity. The road to seeking out the diagnosis for my ADHD wasn't easy, but when I finally received the formal diagnosis & began receiving treatment for the ADHD my life drastically changed for the better. Had I not advocated for myself, had a clear understanding of my symptoms, and trusted my intuition--I'd be receiving treatment for a personality disorder that I did not have. And now I am in the beginning stages of the journey into seeking out a formal diagnosis for Adult Autism. As I continue to navigate this aspect of my life, I have a stronger sense of what I may come across in regards to ignorance from medical health professionals & how to navigate that. I will continue to seek out necessary help from those who are qualified to do so, and I will not stop until I receive that answers I need to help me understand myself more deeply.
If you are interested in my Endometriosis, ADHD, and Autism journey--subscribe and follow me on my platforms. I will continue to make more content and keep you guys up to date on all of these subjects. Cause god knows we need more information and stories out there.
Peace & love,
Irene
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No doctor, no matter how intelligent and educated, has experienced living in my head.
There is nothing more frustrating than having to prove you are who you say you are or you are feeling what you say you are feeling. The arrogance of some doctors, and unwillingness to listen to the patient should immediately disqualify them from a profession of CARE. Self advocacy can be exhausting, but it's so important. Thank you for sharing your story.
it should be illegal at this point
I have endometriosis too, and I spent three years in horrible pain and dealing with doctors saying there's nothing wrong with me and saying it's just a thing I'll have to deal with, even though I was obviously not making it up. I had to fight with a doctor to get her to do the investigative surgery, and she said I'm faking myself into thinking it's there, but sure enough, she went in and did in fact find something. Being your own advocate, especially for medical issues, is so hard, it sucks, but sadly it seems to be the only way to get anything accomplished as a patient in today's medical world.
I can't stop crying. 😭 Every freaking video, of yours, is like hearing my own story told back to me, except I still haven't gotten anyone to listen to me about my endo, autism, nor ADHD... except my neurology team, but they can't diagnose these things for me. The only thing that hasn't been dismissed is my being INFJ. I've been soooo sick, for so long... only getting worse. I've been gaslit by gp after gp, ps after pa. They've accused me of being on meth. OMG! Then when I've had ideation... they try to tell me I'm crazy. My psychiatrist says I'm not crazy and am definitely being medically gaslit, but he refuses to even hear me out about autism because I "talk too much to be autistic." I uncontrollably talk when I'm nervous. Meanwhile... medically... I've got lesions showing up in my spine on MRIs, they told me I had cancer, scared me half to death & sent me into depression. Then pet/ct said not cancer & the dr that said I did denied it, altered my records & refused to give my neurologist the images & results. When I try to talk to a gp, I get easily overstimulated + triggered, due to being gaslit so badly, for so long, then they claim that's proof I'm on drugs or crazy... despite no drugs in my bloodwork. 😭😭😭😭 You get the idea. I could pour my soul out about everything, but it would be too much. I am so grateful I found you!
Omg, I hope things are going better for you in some way now
I really hope some things are going better for you too!! I’m sending you comfort ❤
I am so sorry you went through that. Please remember you are entitled to a second opinion and a care team that takes your struggles seriously. I tried different doctors and I’m glad that I did, I’ll share a bit of my experience.
I got a second opinion after being medically gaslit and told I probably actually had borderline personality disorder and anxiety, keeping in mind I was telling them about my previous very painful experiences linked to ASD symptoms so of course I was going to get emotional and defensive about my experiences. 🤦🏽♀️ My so-called autism “specialist” didn’t even use up to date terms and I wasn’t about to call them out on it an injure their ego and make things worse for myself.
I told the new doctor my experience with the previous doc, she was stunned and disgusted. Surprise surprise I ended up with an ASD diagnosis in the end. Funny enough to contrast with the previous doctor, she had mentioned in her report that my affect was “euthymic” which means calm/neutral, probably because she didn’t invalidate my experience at every turn like the last doctor.
it is disgusting that in so many cases we are being laughed at, dismissed, told it's in our heads or our words/own research being ignored due to us not being doctors. When it's actually us, trying to help ourselves because the doctors and nurses that are supposed to look into those things for us, who should have the education to help us find out whats wrong or whats going on, they end up failing us....not all of them luckily, but especially with non typical chronic diseases this is a repeating pattern and probably led to many people being straight up traumatized by medical professionals, who then likely are to just give up or much worse. I know cause I was and am there and it's frustrating...devastating...just...I can't understand why it should be us leading the search on what conditions to look for to even have a chance at figuring it out (i had repeatedly experienced that I went and tried to get tested for things but if tests came back negative there was usually no further tests suggested or made and I was usually just told: take painmeds if you need, exercise, loose weight, when i mentioned multiple times that I'm so tired and exhausted all the time, my muscles and tendons/joints hurting all over and exercise making me feel worse and breathless and wheezing etc. that i can't do exercise....etc.)
it's like...if there is any possibility that i can be blamed for my health, they will go with that first, before seriously considering checking something.
It's so so important to talk about this >.
You are so right. Thanks for sharing, it’s sort of my life you are describing.
I have self identified with autism and adhd. I was diagnosed with severe PMDD about 5 years ago. I’m set to have radical hysterectomy at the end of the month due to that. Strangely, I have concurrent pcos. It’s a long story but it’s been a lonely road but, I have a great therapist. Finally. Come to find out it’s common to have menstrual issues and autism/adhd. I think it’s estimated above 80 pent of autistic issues have some level of PMDD. Wild!
How are you doing now?
until I was 15 or so I had bad pain too, than took birth control pills. The pain stopped, even after I stopped taking that pills. I feel lucky.
Omg. I have endometriosis too! This is crazy. We need more 😢 aid and awareness. This is one of the reasons why I went vegan.
I’m an RN and have seen/known some serious badass NPs in my time, but I’ve also been traumatized by some bad NPs and some really close-minded MDs, too. It’s appalling how common this is. I’m glad you didn’t give up on yourself and eventually encountered compassionate, knowledgeable providers who could give you the care you needed and deserve
It's so wild that we have to advocate for ourselves so much. Like, things that should be obvious or things that should be explained simply are not. Always ask questions and always clarify - it will save you a lot of anxiety and stress/trauma
Wtf, so many terrible medical professionals! I have met a few myself. One messed up my meds and I eventually had a psychotic break because of it.
Hey Irene, I hope you’re doing well. I had my own laparoscopy and endometriosis diagnose a few days ago after having suffered from horrible pain ever since I got my first period. I am so sorry for what our had to go through and I am so glad you didn’t give up on your fight towards the right diagnosis. I both knew I had endometriosis and never thought it could apply to me because I know that there were people who suffered even more than I do. The same has been in my head this past year bout possibly being AuDHD, none of which is diagnosed yet but it makes so much sense so me. Last year I was very deep into my autism research and told my therapist about my presumptions but she said she doesn’t think I would be autistic so this lead to me going from being 70% sure I am autistic to completely throwing it out of the window. I’ve been back into the research for a the past month and I am now more sure than ever. I have a very big fear of bringing this up tho because I am scared of people’s answer and also very much about making a fool of myself if it turns out I am actually not autistic. Your videos have been helping me a lot on my journey and knowing that you’ve dealt with similar things like I do makes me feel less alone. thank you for being so honest and upfront about this. Wish you all the best 🫂
I really needed to hear this, thank you so much for making this video. I’m going through a tough time with endometriosis. My life is constantly interrupted for years. I feel the same way you felt throughout this long and tedious process.
I feel so invalidated because of my self discovery process. I have diagnosed ADHD and I think I have autism. I have done SO much research and yet the people I live with say that I can’t be autistic because I don’t struggle. I struggle constantly, they see it, but I guess they choose to ignore it. If they don’t see it, they aren’t paying enough attention. I would say things like, “I don’t want to do that I don’t like being commanded around!” or “stop asking me questions.” And they would call me sick. It just makes me so sad and I just wonder if I did something wrong to make them treat me like a freak. On another note, I love your channel and it helps me gain more hope. Thank you.
Self dxing is and always will be valid 💗You are valid and you deserve the support you feel you need. You aren't taking anything by getting to know who you are 💗
@@ThirrinDiamond thank you so much. That means a lot.
Just because your autistic doesn’t mean you dont have to do things you dont want to every person has to do things they dont want to regardless of what condition you have your family can see through your bullshit
I’m sorry to hear you live with chronic pain, have heard how debilitating it can be. When you’re in constant pain, it can sure be hard to take care of even the simplest things
thank u for sharing, i am struggling with health problems and my own family minimized everything I told them and they do not care so I have to take care of myself although is very hard to work in my state of health.I keep looking for a solution. This video make me feel validated thanks
Whoa, what you said about your psychiatrist tearing up…how inappropriate. Frankly, it sounds like *she* might be dealing with a mood disorder and (was) projecting that on you.
I’m very frustrated with my own experience on this, presently, especially “not looking autistic” enough when I live every day of my life with every single trait you’ve spoken to (in your most recent videos, notably). I’ve said before and I’ll say it again-your channel is giving me so much hope and encouragement! Thank you for the time you dedicate to creation and delivering this valuable information to your followers!
PS: I too have endometriosis and was diagnosed in middle school. I’m so glad you were able to get your diagnosis because women are seriously overlooked and pushed aside in our medical system. Even having an almost lifelong diagnosis I too have been dismissed by doctors who somehow think they know my body and experience better than I do, and it must “be in my head.” ❤️🩹
Be well and thanks again for this vid and channel!🎗️🌻
The absolute horror stories I've heard of absolutely everyone who struggles with endometriosis really leave me speechless every time. I cannot wrap my mind around how you guys are able to live like this FOR YEARS in most cases. My heart goes out to all of you, I'm so sorry you suffer from this condition and on top of that receive no help or even acknowledgement at all or at least for a long time.
It sounds like the doctor you spoke to that teared up and got mad, was the one being emotional.
She said something to you that is wrong no matter the situation and sounded like a slight, but she was the one that emotionally reacted in a big way, and then told you that you have a mood disorder........... That doesn't really add up. I do hope that she was ok though, it sounds like she was finding things difficult. And I'm sorry that appointment wasn't the best experience for you, especially after all the others you'd already had.
I'm so sorry you've had the experiences you've had, just to get the care and treatment you need. But I'm glad that you got yourself there 💙💙💙💙 it can be really difficult
I'm sorry about what u went through, u r so strong
This is a very needed video.
Thank you so much for sharing your experience. I really struggle in asking for help with anything, much less medical concerns. It’s really comforting to know that treatment is possible even if it’s difficult to get
Thank you for sharing this very hard personal journey. Mt heart goes out to you and this helps me as I go through similar experiences.
Oh I know this struggle well. I'm still in the proces of getting an diagnosis on different topics i.e. bowel and muscle problems, autism, gender-related stuff, etc. and man it's so f-ing hard. It's always "you're just stressed which causes these problems", "I don't think that is bad", maybe we should first focus on this thing that doesn't bother you instead of the thing that has an immense impact on your life. Couple this with a childhood upbringing of people pleasing/not talking back and it's hard to stand up for yourself and being firm in wanting to have certain tests done. I'm slowly builing myself up to doing it but it is scary.
I’ve been seeing a psychologist for a couple years because of my ADHD, but things stopped getting better a while ago. Talking to my wife and close friends I discovered several patterns I went through my whole life were obsessive behaviors I had never voiced before, because they felt like they were part of life, stuff everyone goes through… turns out I opened a new can of worms, but my therapist wasn’t open to none of that, and dismissed immediately. I had an hour long monologue of new things I had never noticed, and she said “she knows me”. I felt betrayed. I felt my issues were being looked down upon. She didn’t laugh, but it was condescending.
I didn’t buy it and went to a psychiatrist for help, turns out it might indeed be something else, level 1 autism, or ADHD + OCD. We’re investigating that now and just the validation of my issues being real, no matter what the final diagnosis ends up being, I can finally see a light at the end of the tunnel.
thank you
I believe that i have autism as an adult that is undiagnosed by a professional. Ive been to many doctors and both adhd and bpd were brought up. I was also told that even if i did have ASD that there wasnt treatment available for it as an adult. I still struggle with not being able to be a normal person and frequent meltdowns.
It took me 15 years to get a diagnosis, you're not a lone and its disgusting and I'm so sorry for your experience as well
Nice to see a new video from you! I really love how your black hair makes your skin pop. Missed your content.
Aw thank you Banana! Yes, I’ve been growing out my natural hair ☺️ Thank you for watching, hope you enjoy my videos from here on out🌼✨
@@thethoughtspot222 i loved your video about your narcissist ex bf. I am currently dating and living with a narcissist so i get it.
@@asmallbitchybanana I hope you exit that relationship as safely as possible!
@@thethoughtspot222 i hope so too. I left briefly for abput two weeks only to be sucked back in and now here i am again. I guess only time can tell really.
I am almost 1 month post op and I want to be a brave women. I am a 34 year old latina women who got her excision very recently. I will be making a video about it in a week or two
I’ll be covering other very important problems such as insurance, money and healing post op plus doctor information
Oh that doctor that told you that "you don't look autistic"... I wanted to say a WHOLE BUNCH of things that are inappropriate for TH-cam comments
🖤
32:24 where what website
Im non-binary/trans masc and ive had the same fucking shit happen to me many times. Im so sorry to here other people experiencing this but im also so grateful im not alone
Well how can I start actually I've already see couple mental health professional the last time that I saw one last year they gave me a test that was the mmpi-2 and the results said that I could have either schizophrenia, bipolar disorder or schizoaffective disorder, Autism grade 1, or an unspecified personality disorder I on cluster A or B , I was on the process to confirm which of this I definetely have but so many things happen and I quit therapy again, Indeed I do think that not only I have Autism, also ADHD and a dissociative disorder so did not surprised me one of the sugestions of diagnose was schizophrenia it's often confused with dissociation for some reason, but I live in dominican republic and here is really hard to get good mental health assestment or health Service in general to be honest. Now I Will try to seek some help at My college and see if I can restart from it but idk don't know how many years more I Will spend until get the assestment that I need and be heard and not rigth away be labeled as schizophrenic or something related, anyway I do have relatives with Bipolar Disorder but I do not share at all their experiences except the feeling of being odd or different than other people and their impulsiveness but rather than that we are not similar and I did explained that since the beginning and ask to get the tests or exams that could confirm or discard everything needed and I won't refuse but I felt by the conversation we had the last time that I was already labeled as schizophrenic mostly bc my social isolation, self oriented personality and "excentricity", I also experienced crisis maybe meltdowns not sure but was really frequent on the recent years Even I ended up in emergency room and everything and just rigth away I was told I need med bc I migth be schizotypical personality at least so I'm really afraid and almost defeated uncouraged to keep seeking help bc I did tried med for psicosis and mood regulation and did not work just caused me feeling numb, like if My brain was dead or almost not working, sleepy and dizzy and it was supposed to be a low dosis eventough they wanted to increase it that was bc I was not getting better instead of try at least another type of med why keep trying with the same one if it clearly not working one bit, I mean I truly don't care if I have one disorder or the other but neither they try to labeled me on explain My experience I just want what could work for me that's all.
Avril Lavigne was already extremely famous when she caught Lyme and even with all her money, influence and power as a white person she also had to self-diagnose and find a specialist because no doctor believed her. They told her she was just being lazy or that it was all in her head. Imagine how many less privileged people have died because they weren't taken seriously!! I'm so so sorry that getting proper care took so long 🫂
What are u supposed to look like if you have autism ? Like what is their idea of a persons appearance exactly to have autism?
As a nurse I apologize to you for those stupid colleagues that don't deserve to have their diplomas and work as such.
Wow this sounds so much like Lyme Disease.
I'm glad you had help. I'm have several years your senior and still have people telling me I'm lying. I've had to go for years and different specialists for simply shit like gallbladder removal. I'm not ASD...I can look someone in the eye and hold a conversation. WTF. Was told to off myself by my ex spouse and family. So glad there is support. Unfortunately they do this a lot. They don't give a shit.
it took me two years to accept my verbal endo diagnosis. I’m not sure why i didn’t believe her professional opinion but it’s just starting to hit me. This vid helped motivate me to push further for the lap 🤎
I have 0 idea how i was diagnosed w/ manic depression. But im p sure its adhd n autsim. Getting help for this soon 💖🫶🏾
Omg totally relate. I’ve been these folks that is not my issue. Trying to get adhd diagnosed now and later on seeing about autism etc.
Telling*