What Not To Say To Someone With A Chronic Illness
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- เผยแพร่เมื่อ 4 ก.ค. 2024
- You requested it, and here it is! What not to say (and what to say) to someone with a chronic illness.
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The guilt of being home is horrible!! People don't get it!!
Andrea F I get, oh a lady of leisure! Really, it makes me so angry!
It's like your mourning your career and it's truly the worst thing ever to happen it took me 10years to stop fighting losing it and now I don't know how i ever did it with a smile it's very hard to keep telling people remember i'm sick and cant do it it makes me want to scream do what makes you feel better not others say or does it for them and learn to say bugger off to the haters and i'm one who is very vocal about it. It's as if people don't realize we research everything to be better swimming is the only thing that i can do as far as exercise and that's 10 minutes to all of you have more good days
The guilt of calling into work when you're sick in bed, the feeling you're letting your team down. But, then my self care overrules. Having a chronic illness forces you to put yourself first. I part everyday to be healed.
And the fact that I can't drive and have to ask for a ride I don't wanna be inconvenient or a bother
“You’re so lucky that you can sleep so much” yes I absolutely love wasting away 2/3 of my life in bed
SO TRUE
Huh I get this. I would love Love to move around and not have unbearable pain in my feet and hips and be active with my children.... yes being in bed is sooo much better than having a life 😒
My bf complains about how much I sleep. He keeps telling me I could get more done if I didn't sleep so much. Of course I know that, but it's not like I can control how much I sleep. I'm exhausted about 90% of the day....
Fiona M On this comment topic...one of my best friends ever is familiar with my rare disease. Because weirdly, her OTHER best friend has the same disease. They live out of state from me in Texas. The fact that she knows 2 people with this illness is bizarre.
But anyway, the rare disease we have renders patients bed-ridden often. A couple years ago, I was shocked when she said "Being bed-ridden is a LUXURY. I could never have that luxury. Sick or not, I have 4 kids who need me."
Mind you...her other best friend who has this.....had to give up custody of her 13 year old daughter to her ex husband, because she's too sick to care for her.
It's hard to be patient with people. Sometimes I just want to yell "Ya well I'm glad YOU would "do sick" so much better than everyone else!!"
But I don't. Lol. UGH. 🙈
You might look in your sleeping but your really having some much pain. Once I had to miss a Disney field trip because I was in the hospital in bed in pain.....yup I'm so lucky :\
When I was first really sick I had initially lost a lot of weight and kept it off for a long time because of restrictive diet due to illness. One thing I've gotten quite a few times is, "I wish I had a chronic illness so I could be as skinny as you!" No. No you don't. Things like this really show that people just don't understand. Thanks for making this video!
+Sarah Elizabeth I’ve heard this one too! So crazy. Thank YOU! 💜
I feel you, I lost 6kg on my last surgery because I couldn’t eat for 2 weeks (I had intestines surgery)
A lot of people told me that at school...
YES! Me too...so annoying:/ I have had that multiple times....one time, I just replied, and all you have to do is involuntarily vomit 40 times a day.
I’m actually gaining weight right now, and I’ve been eating healthy.
I had this many times since my newest illness. I had an allergic reaction that triggered many other issues and I literally couldn’t eat and if I did I would get extreme bloating and sever pain in my stomach (eating less than 1/2 cup of anything). I lost 15 lbs in 2 weeks and all I heard even from those who knew what was going on would say “I wish I could do that”.
Here’s another one for the comparison topic: “at least your not dying”. Yeah well, sometimes I wish I was. Pain hurts. My joints burns. It’s hard to hold my brother. It’s terribly challenging to do stairs. (I have POTS. Postural orthostatic tachycardia syndrome) it’s hard to walk home front the bus. It’s hard to go on long car rides because my joints get stiff and hurt more. I am not trying to complain. But comparing is, for me, one of the worst things you can do. It’s very invalidating, and hurtful. It makes me feel like all my struggle is not important.
That’s my rant. That doesn’t mean that anyone else feels like this. And if anyone does identify with this. I empathize. I never say I understand because I don’t. We may have similar or the same condition but that doesn’t mean we experience the same challenges.
Camden R 😓😓
I have cerebral palsy and I also have trouble doing those things I always have to be careful the way I move trying to reduce pain and make sure I don't paralyze my legs it's excruciating. It's difficult when my family doesn't understand how painful things are and that I have to do things differently. All the joint and muscle pain that never stops but changes everyday is exhausting. I do things at a slow pace and walk slower to manage pain
I also have POTS and I can totally relate!
Amen! I have fibromyalgia and the number of people that have said it's in my head or that it isn't a real illness is easily in the double digits. Thank you for spreading awareness, Mandy!
Amanda S ugh, I can totally relate to that frustration! I have Ehlers Danlos and it seems like nobody has heard of it/doesn't think it's real or serious
Omg so true!!!
@@sarahserenity3872 I can understand what you are going through! I have EDS, too.
I've gotten "are you feeling better? You look better! They ask excitedly at church... I feel bad saying no. It's like they think I have a one week cold lol. Thanks for the video Mandy! Praying for you!!
+Glory Mendenhall Yes!! All the time.
Someone said that to me
I have cfs and right before I got diagnosed I had a doctor say “yeah my teenagers hate getting up in the morning too” and proceed to just call me lazy, this was after telling him all of my symptoms and telling him how much I loved running about and how energetic I used to be and now I cannot do any of that, it still affects me to this day and I get paranoid that I am just being lazy but then I do something that your average person does everyday and I crash and then I’m like “oh yep, there it is, definitely chronic illness”
I have to constantly prove to myself that I have a disability as well. I’m my worst enemy sometimes. 😢
I know a biggie for me was "You're focusing too much on your sickness and not enough on God's goodness"...I mean, I believe in living and walking by faith...but that is definitely hurtful to hear sometimes! When you have very real symptoms it's really hard to ignore it. I think acknowledging your symptoms, but still choosing to believe that God is good and that He wants you healed was more realistic and even MORE faith based...like even though I literally feel awful right now, I'm still going to run to Jesus through the pain. haha not sure if that makes sense...but it's helped me!
+Ellie Stanchak Yes, I’ve heard similar things to this. I completely agree!
Me too ! It's like depression is also linked to weak faith I'm told, it just makes you feel worse at times of feeling down about symptoms
Ellie Stanchak God's goodness is keeping me from punching you in the face right now.
I just got diagnosed with Gastroperisis POTS and Mast cell activation syndrome and I got told by my dad that I needed to pray that God fixes me....
Ellie Stanchak 🤮
The worst thing I got was "you are just depressed" and it was from a primary care physician. Not even a psychologist. She completely ruled out all my symptoms and pushed me out the door. I still get upset at the memory of it. I did see psychologists too and they even agreed with me that something else was going on. Kind of wish I could find that doctor and show her proof that my chronic illnesses CAUSED depression, not the other way around. But *deep breath* something to let go of, haha.
YouShotMyRobot I got the same exact thing from my primary as well smh 😒
I got the same which I why I never go to regular doctor anymore. I went undiagnosed with thyroid issues for years when I was younger, because they didn't do a full panel. I had no idea what the full panel was back then. Instead they pushed anxiety meds on me. I agree. Feeling depressed from feeling crappy all the time, not depression causing the illness.
One thing all of my coworkers always say to me when I'm not feeling good is, "I hope you feel better." With an autoimmune disease it's hard because I want to feel better, but I know deep down inside it won't happen overnight so it always makes me a bit sad (well that's just me).
It makes sense. What would be a more helpful thing to say to you than “feel better soon”?
I've been sick, mostly undiagnosed, for 6 years and my family still gripes to me about how I should get a job or complains when I leave a dish in the sink. They can't understand what it's like to be in a state of constant pain, fatigue, and weakness, and still look "normal," which is ok because you really can't expect them to. You have to experience it to understand it! What hurts is when the people you want to understand you so badly seemingly forget entirely that you're struggling so much on a daily basis.
What you said is so true, we don't want/need pity or to be treated like we're inferior in some way, only to be asked how we are or how to help us without the intentions of trying to FIX us. A little love goes a long way! I know my family and sometimes my fiance get frustrated that I can't just snap out of it by eating better and exercising, it's so hard to watch someone you love suffer and not know how to help them. That's why we each have to express the best way to help us to the people we love, they already love us but may not know what we need!
offtoneverlxnd So sorry you are dealing with that. I do know exactly how you feel and no one can understand unless they have been there. You are not alone! It's really hard.
Omg I cannot do a bunch of dishes at once, especially after prepping and making my dinner.
I understand I have Sarcoidosis and fibromyalgia and it's just nice to know someone else understands
I'm so sorry you are not feeling well . I know that it feels lonely . I hope you have more good days than bad . Pls try not to be hard on yourself. It's not your fault . Take your time . Love yourself because you are SOMEBODY!
offtoneverlxnd We need empathy! Just a little kindness & no judgement!
My mom is the same way
Ah, "But you don't look sick." 'It's almost better to be told "you look like s***" because you can always reply "Yeah, because I feel like s***" And maybe they'd begin to understand.
"At you are not dying" Im not really living however
This is such a good video, Mandy. My famous line is: "I don't want pity. I want understanding.' I do worry people will consider me lazy when I can't do something. I have one thing to add =) It really upsets me when someone uses my illness as a way to push whatever product they are selling because whatever it might be will no doubt be the answer to all my problems. That bothers me because it implies that I'm sitting here helplessly not trying to find the answer. Anyone with chronic illness doesn't stay in it because they want to. They don't have a choice. They long to do all the 'normal' stuff in the 'normal' way -- the very things that most complain about. I'm just coming out of a two-week flare from lifting my granddaughter out of a baby swing. So, all that being said--thank you again. It really feels good just to be understood and I won't even jokingly tell you, 'I know how you feel.' But I will say that I'm praying for you and I pray for God's mighty healing hand to take away your pain, and restore your health fully. I'm pulling for you!
My mum has ME and for the first few years she was really bad and had no energy to cook and me and my sister were 10-12 years old so we didn't know how to cook so we got a lot of junk food that didn't take much to make and my mum gained a lot of weight and everyone just sees her as a fat lazy person instead of someone with ME. From the past year she has been loosing weight and eating healthier and she's slowly getting better even though she has those days where she has to rest but I'm happy she's managing it.
I can really relate to everything you said! I was diagnosed with CFS over a year and a half ago and have been housebound since then. I hear " well, you look good". I sometimes feel alone with this illness.
“you look sooo much better, i’m so glad you’re doing better”-this is the absolute worst thing to say in my opinion 🙄 yes, yes yes to all of this. thank you for making this video!
And I know we all hear it so often 😅. Thanks for the sweet comment.
Thank you so much for doing these videos. I am a retired pastor and my wife has CFS. I am so thankful we are retired and I can devote my time to serving my wonderful wife. I'd really like to be able to exchange thoughts with James as I'm sure he is a lot like me, I would gladly trade places with my wife. The spouses have issues to deal with also.
Truth! I have had chronic osteoarthritis, sciatica, herniated disc issues for 11 years and can barely function. I have to file for disability and move to NV for a drier climate. I'm only 43. Sucks big time.
That sounds incredibly challenging. I'm sure you do relate to a lot of these things that people say. Believing progress is possible for you!
I'm 17 and I've had spinal osteoporosis, spinal arthritis, herniated disks and chronic back pain since I was 14. I feel you :(
What a way to live!! 😞
At 51, my healthy, happy life, died!
I have herniated disc, osteoporosis of the spine, spinal stenosis, bulging disc, bilateral hip bursitis, Costochondritis ( new one) sciatica, AND, fibromyalgia.... CRAZY!
I was a performer ( singer) can’t do that anymore!
I LOVED TO DANCE, ( can’t do that anymore), Loved to paint and decorate my house and others, ( can’t do that anymore) so, yeah, you’re old self, dies, and, you’re left with, pain, doctors appointments, medications, sadness, and, oh, PAIN!!!
All these prayers here and on your face book page. Cured yet? So god gives us an illness and then we pray to ask him to take it away. A tad bit sadistic in my opinion.
The best 2 I have heard for my chronic illness "It's all in your head" "Maybe you have money problems" Nailed it:)
Lol. Whenever they say anything ignorant I reply, “send money”....
@spirals 73 Your god created life, he also allowed for genetic diseases to develop and for people to get sick. He also made comets and asteroids to strike the earth, he allowed deadly virus, parasites, bacteria to form and kill us. He could change all that. This earth was made for us to suffer. I didn't ask to be here. My mother had a mistake. Did god create that mistake or does he have a plan for me? He created all of this before the fallen sin.
In my experience, most people I have known who have a chronic illness and still work do so because they feel they have no other choice, not because they feel up to it. I have a friend with Chron's and she recently was able to quit her job and stay home with her little one. What a blessing for her! So thankful.
True! I worked (and struggled so much) while having chronic illnesses because I felt I had no other choice. Especially since at the time, no doctor could tell me what was wrong with me. I work from home now and the company I work for is very understanding of my situation.
Melinda Pease I feel so badly for those who are forced to work despite having a chronic illness! I’m very progressed type 2 diabetic, on insulin (despite taking excellent care of my blood sugar). My disease robs me of energy at a cellular level. My immunity also suffers so underlying herpes virus causes flu like symptoms and mouth ulcers. Thank God my husband can pay the bills because I would never qualify for disability. I literally have no energy to work. God bless those who must.
My ex refused to believe that my CFS was physical (even though I'm as healthy as I could be mentally according to my doctors). So he would always tell me to just push myself and get up to exercise and live a normal life and then I would get better. This was really hurting me because when I first got sick (and several times throughout my journey with the illness) I would push myself because I felt bad about "wasting" time in bed, and that would just make me even more sick. So I had finally accepted and settled with the fact that I need rest to get better, and I started to slowly get healthier. After a while of him constantly pushing me about this, I got so exhausted with the arguing (I'm a conflict shy person so this was really draining me) so I gave in. It's a couple months later now, and I've gotten sicker and dealt with a lot of pain and missed out on a lot more activities than I would if I hadn't gotten worse.. I don't know if anyone will read this comment, but it is good to share with someone who understands. I'm so tired of people constantly commenting their opinion on my illness just because they read some random article about it or because they think the solution to my illness will be the same as another totally unrelated one. Please be careful about over sharing your opinions about an illness to the person living with it (no matter how right you think you are).
I look ill, makes it easier I suppose. But I have to deal with a face I no longer recognise.
Great video. I'm 5 years late to the party, but hearing "You're never here," or "You're never at these things," or "It's so nice to actually see you out," whenever I am able to venture out and socialize is taxing as heck. Having people make a fuss over my appearance at every function I'm able to be at makes me not want to go even when I'm feeling good. Please just say hi and treat me like I'm anyone else.
Also, if you know we are chronically ill and you see us with a cane or other assistive device for the first time, please don't make a big deal about that either. Taking a cane out in public is a big step to some of us, it's the last thing we want to show the world we need. Let it go unnoticed. If we want to talk about it, we will.
I was given the "just drink more water" advice too
Love this video! I have rheumatoid arthritis and people do not understand that it is an autoimmune disease. They just hear arthritis and think oh my uncle, or grandma had that. Uh no they dont. They have arthritis which is completely different. Awareness of the actual disease is much needed. In my support groups we talk about how they should change the name to rheumatoid disease . Just so there isnt so.much confusion. Your amazing!! Keep fighting and praying!
Dianna D I have the same thing I didn’t know there was a difference.. I suffer everyday and ppl think I’m exaggerating
Oh my gosh yes!!’ I’ve gotten the same thing!! It’s not Oste arthritis..
My doctor wanted to test me for that. But in all honesty I don't want to know. I'm too young for that anyways and I have Narcolepsy to worry about and I don't need to add to the list.
Ohh yes. “I know how you feel” is one that digs under my skin. Thank you so much for stating that one. I was hoping I was not the only one who was bothered my that one, but it is not one of the many that are commonly talked about.
Yesssss!!!!!!! I have Sarcoidosis and i have heard similar ignorant comments from folks. One comment i get alot that i really hate is, "you're too intelligent to not have a job." WOW
I’m getting tested for sarcoidosis soon , hope I don’t have it
I loved your video. I've had panic disorder for 30+ years. Thank you for spreading awareness about invisible illness. Prayers continue.
The one I hate is "why are you so tired?" "Why are you sleeping so much?" Ugh it's so irritating! I would love to be full of energy and not be so tired all the time! I am praying for you Mandy!! You are making a difference ♡ Xoxo
+Jennifer Chase Yes! That one is tough too! Thank you for your encouragement. 💜
Mandy Meehan you are so very welcome! Thank you for encouraging me to do more research and improve my health!!
Someone told me "Just stop being in pain" and they were being serious
The "you don't look sick" gets me EVERY time. I have friends who don't understand significant illness at all. But then I have friends and family who "Get it" for lack of a better term. You almost have to be your own expert and advocate so you can teach people who want to be taught, really. Thanks for this excellent video, Mandy!
yes that is right... i have lupus... when your best friend can't even understand you..
I know it’s tough! Praying for progress for you and for understand from your peers. 💜
thank you... same with you :)
Thanks for the video, I used to go to the gym almost everyday and would run forever then the fatigue hit and then pain and the diagnosis of rheumatoid arthritis, chronic fatigue, and fibromyalgia. That was 4 years ago and it's still not under control and am still searching for the right cocktail of meds for me. I appreciate you putting yourself out there.
Oh girl, I know it's so tough! Thanks for your sweet comment. Praying for progress for you!
Lol love this video! And everything you said is so true. The frustrating ones are when people automatically scream Lyme!! At every post. Or automatically say "You just need to push through it" girl i understand it is really frustrating. Like my sister whom i no longer speak to used to say " I'm in pain every day and i still have to push through and go to work" pain and severe chronic fatigue are two entirely different things. Some people won't get it until it happens to them.
+yt36 haha, yes. I so relate. So sorry to hear it has made things tough with your sister. So nice to know that there are others out there who get it!
my father disowned me too I was devastated 😢 I can't understand people like this. We can't help it !
Ugh i hate that 'you need to push yourself' comment. I feel like shouting I AM PUSHING MYSELF! When youve got chronic illness, getting out of bed can be pushing yourself. I used to get that all the time before i got those people out my life. So ignorant.
ThatNoraChick Many people treat the Lyme infections and still have symptoms. It’s a matter of the immune system getting the upper hand and having enough resources to prevail. That’s the holy grail... and it’s elusive.
This is so spot on! Has made me feel so much better that someone else shares my frustrations about the thoughts of others. Glad to have found your channel and subscribed 😀
I love this! Thank you for helping spread awareness and for you're loving but honest side of this.
It is crazy how misunderstood invisible illness is. I had cancer last year that that should have been harder than having an autoimmune disorder, but people understand cancer and I "looked sick". So the way people respond and support you is completely different. Thanks again. I really enjoy and look forward to your videos.
Thank you so, so much for sharing this, Mandy!! I struggle a lot with the comparisons you mentioned, but the truth you spoke took away the lies & conflict in my head and heart! I also appreciate you giving grace to those who just can't understand while reminding us that we're not alone when we are hurt by others' comments. I really love a way you said others could show empathy..."Help me understand what you're going through even better; help me understand your illness."
You are so on point! I felt everything you said sounded just like me! No one gets it, unless they also have an autoimmune, etc, unfortunately. Thank you, Mandy, for making this video that I can share with my friends to help them understand.
Thank you for this video so much ! I can relate to everything that you have said ! I too suffer from fibromyalgia and also have Rheumatoid Arthritis amongst other chronic pain illnesses and I have heard all of these and more ! I think it’s amazing that you’re spreading awareness on behalf of everyone with a chronic illness and Iv subscribed and will be an avid watcher 😊 gentle hugs and blessings xxx
I do not have a chronic illness I do have chronic pain. I sympathize so much with hearing how "lucky" I am to not "have" to work. Yeah..its totally worth not being able to sit or stand upright for any given amount of time so I can stay in these four walls and feel guilty that my husband is working to support me while I can not get up enough energy or vitality to even sweep the kitchen..Yay. It is even worse when they see me during a good time and I am fairly functional. Then they question how I cant work when they saw me for a half hour shopping..they dont know that was the first hour I have had without being in terrible pain in 3 days and I am usually trying to beat the pain coming on and dont have time to explain.
avaorchid yes! I totally relate!
You put words to so much of what I endured the last couple of months!! Thankful for alll the support as well but your explanation goes a long way because our symptoms can be invisible to those around us... I really get what you are saying and from the bottom of my heart thank you!!!
I am 15 years old and have juvenile idopathic arthritis and the thing that gets me is when older people who have rheumatoid arthritis or osteoarthritis come up to me and go ohh i understand how youre feeling. Like im sorry you dont understand how i feel. You will never understand what its like to have to sit out of gym class and spend the whole time watching your friends get to participate in physical activity to only have them come up to you and tell you how they wish that they could be like you and sit out. Along with feeling so damn tired to the point where you just cant concentrate in class. Its hard. Like i get it you may have arthritis but its not the same...
It definitely is tough when someone thinks that I they understand...but they clearly don't. Hugs!
thank you!! Your video is right on. So many well intended people don't know what to say or do for a person that has a chronic illness. The isolation and not being the person I used to be are the worst things to deal with. Yet people think you have chosen to live this way. Praying that all of us suffering with this have lots more good days.
Thank you for sharing your story. Thank you for helping me feel that I’m not alone. I struggle with this on a daily basis.
Thank you for this! I wish everyone around me took the time to watch your video! I've been struggling with my mental health as we work towards a diagnosis for my chronic pain. I can relate to so much of what you said in this video. Thank you!!!!
I've gotten plenty too. 1. You need to pray more 2. You need to have the demons prayed out. 3. You don't look sick 4. How bad can it be, you have to be exaggerating it. 5. Why can't you just ___ fill in the blank. 6. You're making it up. 7. You need to think more positive 8. Well at least you can afford to go the doctors. 9. At least you don't have to work. 10. Good thing you don't have kids that you'd need to take care of. 11. Why can't you just do it anyway and your body will adapt. 12. Maybe a good therapist would fix you. 13. Or it's probably just depression or something, and medication would probably help it. ... NO ONE would make up something like this. Like oh yeah I choose to have all of these "fun" issues and spend my money on doctors instead of fun stuff. Or stay home instead of doing the things I love. I don't mind people offering what they think might be helpful advice, it's all in the delivery and the intention. You can always tell the difference.
Bless your heart Mandy you are one strong individual and a constant beacon of perseverance and positivity
+James K Harrison Thank you so much for your encouragement!
Great video- you were wonderful at expressing things without coming off as negative.
This video has so much grace and class and is everything I wanted to say without being hurtful. Thank you for making this video! I shared. I to have chronic illness and it is especially hurtful for me to hear “I wish I could nap all day instead of work” or “I wish I didn’t have to work.” Also, when people think you’re just being dramatic even if they don’t say it they still treat you like you just want attention and ignore you or roll their eyes. 🤨
I have lupus. A friend said the, “At least it’s not cancer,” line to me. It was all I could do to contain myself.
This is so helpful to better understand my sweet Mama and her chronic illness. Thank you so much for being open with us!
+Elisa Johnson So glad it was helpful. 💜
Ugh so true, right on! Thanks for using your energy on this. Understanding, listening and seeking understanding (empathy) are such gifts.
Awww "thanks for using your energy on this", thats such a nice comment. I'd love for someone to recognize when I've made an effort for something like that. I'm going to use this!
i just hate it when people give me advice.. i honestly feel like ill loose my mind. ive been told to exercise, a change of diet, stretching or just always moving. they dont get how hard it is ti live like this. im constantly in pain and i go to school every day or as much as i can. and my mom thinks im faking it because i dont look sick. she always says just exercise or change my diet.. i honestly feel like swearing at her. out of all people i'd hope she'd be atleast supportive. this chronic illness hurts really bad and i dont have anyone to talk to or to just cry to. i cry myself to sleep and when i wake up i tell myself to be strong and not let anyone know because i dont want advice or comments like all the ones you've mentioned and more.because of the pain i've constantly felt like i want to live anymore and i cant tell anyone that... not a month goes by whereby i dont think about sleeping and never waking up...sometimes i wish the doctors would just tell me im dying so i could finally have peace. so thank you mandy for being someone i can relate to
nikelwa marasela ❤️❤️❤️
This is so relatable
It got "of course you're gonna feel pain when you think about it. The medications (I get small doses of medications for chronic pain) isn't good for you, just have to convince yourself that it doesn't hurt and it won't"...
Thank you for this Mandy. And thank you for your transparency. I was diagnosed several years ago with CFS, hashimoto's, Sjogren's syndrome, and autoimmune disease in my inner ears - basically a whole combo. I resigned from my job and spent two years on the AIP and resting and achieved remission (praise God). Two years later, I've relapsed :/ I say all that to say, I hid then, and seeing you be bold and transparent is more encouraging than I can say. I've been so discouraged by relapsing, especially as I'm now in a higher stress but ministry job that I am enjoying. So, thank you! Watching some of your other videos to refresh myself and get back in the groove. Thank you Mandy!
Thank you so much for making this video!! Another thing people tell me a lot is that I just need to have more motivation and that if I can’t go somewhere, it means I’m not trying. I’m praying for you Mandy! Your channel has helped me so much!
+Lauren the Unicorn Thank YOU for watching! 😊💜
Thank you so much for sharing this. Im actually in tears because i can relate so much. Being diagnosed with an autoimmune disease in my late teens has been tough. Its been years and no one really gets it.
Thank you for making this video. I really needed this to helps prefer for a situation where I KNOW I will be enduring some ignorant comments and faxed science advice. I wish people could really comprehend how not only unhelpful this unsolicited and non-reality advice is but the underlining factors that are them basically stating that chronic illness is self-inflicted and altogether a character flaw. Makes my brain and heart feel very angry and very sad.💔
😭I realize this was from 2017, and apparently I’m a little late to the “party”, but I just had to tell you thank you for sharing this video! As someone who has struggled with chronic illness, for too many years to count, for the first time I felt like someone actually really understands. Thank you for that. Believing the best for you. Your sister in Christ. 💕
I have Psoriatic Arthritis and most of the time it doesn't show. It is hard for me when people treat me differently because they can see that I am in pain but I have been learning that it is okay to lean on people and that it is nice to have emotional support. I love this post and that you give examples of what to say instead. Thank you for being not only positive but helpful.
Love this video!!! I wish I could get everyone in my life to watch this! Helping people understand fatigue is so hard!!! RA has definitely given me more empathy, so I know it is so difficult for people to understand. One comment that hurts me is, “didn’t you have a nap today? Why are you still tired?” Ouch that is so hurtful...I’d love to have more energy to do “normal” things. Anyway, thank you so much for vlogging! Praying for healing for you!
+Jenni Replogle Thank you. Yes, those comments are tough. Thanks for your prayers!
Thanks for sharing this and for being a voice for those who also undergo intense scrutiny, misunderstandings, pain, and contempt. Hearing someone with a positive, but realistic spin to things and willing to share instead of giving in to isolation. It can be empowering, enlightening, and even a little uplifting to be validated and heard.
The ones that have been the most frustrating most recently are:
"Everybody feels pain" and "He/she/you just wants to live a pain free life" or "He/She/You need to accept pain and 'move on'/'keep up with the rest of us healthy folk'."
My nicer response, when I'm feeling up to sharing and when they'll hear me out is something like:
"No, that's actually a painted or falsely spread misconception and over generalization, so not really. The majority of us really want to have a more fulfilling life, be more reliable, be depended on, be independent, be seen as equals; of which less pain would contribute to or allow more of. Pain clouds our minds, affects our attention and focus, obstructs our speech and physical activity, limits what we can and cannot do both in a binary manner and a spectrum, requires us to make an unrealistic and put bluntly, unfair, quantity of sacrifices (emotional, physical, and societal) that would likely initially cripple (and often does) newcomers. Pain can make us feel guilty about every little thing we cannot do and every little thing that offends those around us because we cannot keep up with them, exhausts us mentally, physically, and emotionally, tests our patience and our spirit, challenges our beliefs and perspectives, has an affect and effect on our religious and political views, and can also deter us from making what others consider "healthy", standard, and acceptable decisions. But, on the positive twist, our conditions often either awaken or maintain this sense of empathy for others in enduring conditions that may or may not have been there before. It puts us in a situation where we have to reflect on who we are today and how we got here and what we want to accomplish in our remaining time. Many of us have quit our jobs and other activities that brought us great joy, purpose, and goals, and have had to relearn who we are and what makes us...well us. It's the plurality of the condition that makes it as hard as it is enlightening."
My less nice response that sometimes comes out when pain or fatigue bests me: "But, even if we did want to have less pain for the sole sake of less pain...why does it offend anybody? Will it make fully functional and healthy individuals live a less fulfilling life? Will it make them the sole proprietors of pain and agony? Why do people have to have this control over what other people can do instead of trying to look deeper at what their condition is, at what makes them tick?"
A little about my condition...
Migraine sufferer since 12 (the kind that comes with aphasia, pain with light/sound, nausea that cancer level nausea drugs can't control, light-headedness, fog, difficulty focusing eyes, light refractions / halo effect, etc, I'm coming up on 3 years of being diagnosed with debilitating and worsening chronic pain in cervical and lumbar discs, stenosis, neck curvature, multiple disintegrated cervical discs that had to be removed, a failed bi-level fusion in the neck, a slightly more successful fusion and laminectomy in my lumbar/sacreal region. I've been diagnosed with 8 or 9 different ailments in just my spine alone, and essentially been told that my spine is equivalent of an elderly man on his last leg. The pain extends beyond the spine to the arms, legs, hands, feet, fingers and toes. There's uncontrollable muscle spasms, haven't slept in a bed in over 2 years. The migraines and other intense headaches that follow a really bad neck day go insanely beyond just a bad day. I've had to leave my job, my career, and have become more and more isolated from the functioning world around me. I do, however, get to see my spouse and daughter everyday now (except when I am stuck in my chair with an intense migraine and fresh emisis bags galore. Before my condition was recognized, diagnosed and treatment began, I was raised a self-sacrificial, worker who gave 110% and that put the needs of others before myself to the point of hindering my health. My focus was on stability and success of those around me and ignoring my needs because my self-worth was dictated by what I could do/accomplish and who I could help, and what sacrifices I could/did make.
God's done wonders with me since I've accepted that it's not normal or alright to hurt so intensely like I have since I was only 12, let alone these past few years. He's done amazing things for me and through me since I've been diagnosed and tried to manage/cope with my conditions. Slowly, but surely, I've seen my empathy increase in ways I couldn't imagine. I only thought I was empathetic, patient, and enlightened before. It doesn't make what I and so many others endure easy. But, it does give a sense of purpose (even if that means looking for and praying for said purpose) to our condition. God does wondrous things through the weak, broken, and imperfect - it brings more glory to Him and belittles the egos and false prophets/idols of our world. LIke you say in many of your videos, there is joy to be had and shared even in the broken lives we all live and our conditions. We don't have to like our condition to accept and appreciate the good that can and does come with it. We just have to continue our faith in His design and pray and seek out what it is that He is trying to do with us. Some of us are growing from it. Some of us are able to act as beacons to others that would not have found us otherwise. God works in wondrous and mysterious ways.
God bless you and your shared messages with the world. God's working through your voice and your experiences both for you, and for those around you. I could relate you to how God was able to use Esther, not to limit your or draw borders, but to empower you and allow you to bring glory back to Him in ways that might not happen if you were otherwise perfectly healthy and functional by society's misinformed standards.
Thank you for making this video. How are about “It’s all in your head. You just need to cheer up and be more positive.” or something to that effect.
You covered a lot here and I love the alternatives you offer. This is a really great video 😊
I like how you addressed giving/receiving advice. You put it very well. I don't mind good advice either. What I DO mind is advice based on assumptions, that sounds like they think that I am stupid, or irresponsible, or inferior in some way.
Ah, yes. ALL the invalidating statements. *sigh* Thank you for sharing your story and being so open.
My husbands family say we all have aches and pains but we have to keep going.
rae1957tn that’s so frustrating 😭
There but by the grace of God...
Good video, the worst is when medical professionals say and do the things you describe. At age 56 I have struggled with many of the same things you have for decades. Last year for me I got teeth infections and found out that most of what I have stems from poor gut health and none of my doctors figured that out but a holistic dentist did, so I went paleo and for over a year now I have been working at it, feeling better but lots of problems. It is the cross we bear, we just do all those healthy things folks mention and it is a way of life everyone should be doing, not just us. I don't think you meant this but you did say about your friend who just got diagnosed with Lupus that it is so nice to have a close friend with a Chronic illness, I know what you meant, but it came out like other folks speak without thinking. The good thing about knowing anything is that we have some knowledge and most of these chronic illnesses have a foundation in immune issues that we can work on boosting up and by sharing ideas and suggestions we may find what we need. Ted Talks has some really good videos that are encouraging with doctors that heal with nutrition. For me I have found I always suffered with a mild chronic psuedo EDS, I don't think I was born with it but due to the insults on the human body with poor food quality, vaccines, illnesses and chemicals that we really should not have as God gave us better things, it is no surprise to me now that I suffer and struggle. Let's pray and trust that the Good Lord always knows what He is doing and in this journey together we will find what we need. May we need it to give Him Glory and enter His Kingdom when He calls and may the healing come in His good time, even if it is just our soul(the best healing of all)Keep sharing and blessings!
Such good advice! I also want to add, I had a friend recently say “we’re having a birthday party and we want your family to come, how can we prepare for that? What foods should we have?” Just to acknowledge that there are special things we need to have/do in order to go to something as simple as a birthday party is so thoughtful! It makes it easier to be in relationship with people and do “normal” things.
Yes! I so understand, "you don't look sick." Thank you!!!
+Sisi Roose 💜
I loved this so much! I’ve been thinking about making a video like this too. Some people have said the craziest things to me haha even close friends and family!
I’m proud of you girl! This video is soooo needed! 💜
SUCH A GREAT VIDEO! Very well said Mandy, Thank you!!
+Sandra Anderson thank YOU! 💜
Finally..it’s so nice to see & hear that someone else that has chronic fatigue syndrome, like myself, just “gets it”...very relatable. Chronic illness sucks 😳🤔🤣🤨 Thank you for making this video Mandy 💜💜💜
Just started watching your videos and am thankful that I did. I was diagnosed with fibromyalgia in 2009, have IBS, and am also a cancer survivor. I liked your comment about not saying "at least it is not Cancer", or some other disease. I often tell my hubby (a preacher) that I actually think fibromyalgia has taken way more from me than Cancer ever did. As horrendous as cancer and the treatments were, I got through it. I only had to deal with it for a certain amount of time. Fibro I have been dealing with for 8 years (with a few remissions) and who knows how much longer I will need to. I am glad you seem to be seeking to be as knowledgeable as possible about your illnesses and seeking the best road map for recovery for your body. I cannot tell you the countless immeasurable ways I have seen the Lord work through my illness over the years and the ways he has drawn me closer to Him and lessons He has taught me. In one of your videos you talk about how it has changed your perspective and I can so relate to that. If you are ever interested I would love to connect with you sometime to swap information with each other on what we have found that works for each other. Whether by email, or messenger or whatever else might work for you. (I promise, no supplement pushing, it looks like you have already figured out the best ones for you.) More just that I have been dealing with this awhile and love to share with others what I have learned to manage my symptoms between lifestyle changes, dietary changes, changes in my boundaries, changes in how I serve the Lord and minister, changes in how I take care of, support and serve my husband and kids and homeschool my kids, changes in exercise, foods that fight inflammation and pain, foods that contribute to inflammation and pain, etc. No worries if you are not comfortable with connecting, just know the offer is there. I have also learned a lot from being a part of Facebook support groups for fibromyalgia and chronic illnesses, plus it can be comforting to be a part of a group going through similar things. It can also be depressing so just know what you can handle. Please know I have added you to my prayer list and am praying that Yahweh Rapha will heal you as he did the bitter waters at Marah. I am praying Psalm 103 for you, specifically verses 3-5.
thank you mandy, very well done!
These are all spot on statements. We as humans don't truly know what someone else is going through unless we experience it or something like it. Therefore, if you've never experienced it, the best thing you can say is "Help me understand". Thanks for sharing.
Yes too often people fail to understand just how bad the illness effects you. Because they don't appear to be sick or in pain. Not realizing the mental and emotional toll the illness can cause.
Hi, blown away at how good this video is. Awesome. Thanks for sharing! Having been plagued with multiple invisible illnesses... I feel ya. You look fine is worst. You cannot see vertigo, or muscle cramps, or migraine hell 😫.. but gee, your mascara looks great. Note, I've been too exhausted to wear make up in over 3 plus months.. washing it off hurts me.
Please do update from 2021! Are you coping better? God bless y'all 🇬🇧✝️💗
This is such an excellent video.
Oh my stars! This is like a list of things my mum does all the time. 97% of our conversation is her giving me so much random advice!
Isaiah 33:24. Every day i feel like death. The pain is relentless. The tiredness is overwhelming. I went outside to try and garden yesterday. Huge mistake. Words cannot describe hpw awful i feel now. I hope you have more better days than worse. And i hope you have an excellent support from family and friends
Thank you for your video. I have trigeminal neuralgia called the suicide disease, atypical trigeminal neuralgia , Chiari malformation, bad neck, Hashimoto's hypothyroidism, premature menopause and a brain aneurysm that concerns me. I fight chronic pain and severe pain from trigeminal neuralgia. I'm married and have kids . I deal with pain everyday. I'm learning that I don't have to show people how sick I am because I feel so guilty when I'm not able to do anything. It's hard because I have such a rare diseases that most people haven't even heard of them. So you often feel alone. On my lower pain days I try to do what I can do with my family.. it's hard I can barely get out of bed every day .... thanks for your video and I love your ideas
I'm my own worst enemy. I try to push myself out of guilt. I end up bed bound for 2-4 days. Sometimes, the depression that comes with the emergence pain has me asking for someone to end my life.
Very true. It would be so much easier if people actually knew what to say and what NOT to say. Thanks!
I have been sick chronically for a total of 15 years. I received a heart transplant some years ago and never really health wise recovered. I too get the same replies and responses like many of us who are long term unhealthy. I learned to sometimes meet others and if possible not mention I'm sick. I think we put others in a disadvantage to say the "right thing" or respond because they don't know whay to say. I do have a hard time with the same comments about this issue. Thanks for bringing this to the forefront.
Thank u, I can relate to everything you stated. I have R.A., fibromyalgia and lupus. I'm in pain every day and everyone has said these things to me. Which has made me feel worse. Until I stopped them when they say it. Thank u for the video
It’s so nice to have another Christian put this is in such a well spoken and nice way. Thank you. This encouraged me. I have been feeling so down and frustrated with people not believing I’m sick and I’m struggling worst then I ever have so it’s nice to relate and this made me feel validated. God bless!
OutOfTheKlosset Thank you so much! Hugs back and prayers for you as well. You’re right. I don’t need to prove it. The Lord knows and that’s all that matters. 💕🙏🏻
This is a great video. The worst things I have heard are... "you don't look sick, do you just want to have something wrong with you?" "I am probably more tired than you are." and my favorite... "if you can't get out of the house you're probably just depressed." I also got mono last year in October and have never recovered. You helped me sign up for Switch at the Jenks campus and another leader at Life.Church told me about your illness when I was still able to serve. I have followed you ever since I discovered your vlogs. I am still having test after test ran to figure out exactly which autoimmune disorders I have. I'm praying for you girlie! I truly do know how you feel and am believing in healing for both of us. ;-)
Good job addressing this issue!
Some comments would be really funny if being ill wasn't so hard... I've heard so many versions of 'if you'd..' Some of them with the words pet or husband (tried both, still sick surprisingly). I stopped using the word fatigue a long time ago. Healthy people associate that with having to sit on the couch after a long working day. While for many of us sitting is exercise. CFS is a ridiculous name for a neuro-immune disease. We are not fatigued, we are ill. I usually explain it feels like the flu, of like I just finished a marathon. Or the longer version: Like running a marathon with a heavy backpack while having the flu, without having slept for 24 hours and with an empty stomach. But most friends and family really get it after they watched Unrest. Making the illness visible was so much more helpful than any explaining I ever tried.
I’m so exhausted.. all the time. I have hyperandrenergic pots and some other chronic illness (ms or lupus) they aren’t sure. But it’s very hard to deal w the pain and the exhaustion and all these crazy weird symptoms and no one else truly understanding. One of my least fav comments is “maybe you get toooo much sleep”. Ummmm yea. I feel like not having a diagnosis to justify my symptoms also doesn’t help. It’s very frustrating and lonesome. I also think people tend to blame all your symptoms on anxiety and focusing too much on your little issues. But what they don’t understand is I ignore them!!! I try to move on w my life even though I pass out, have chronic low grade fevers n night sweats, essential tremors, dysmetria, frequent blurred vision,htn, tachycardia, sob, exhaustion etc. and the list goes on. Oh great yea I’m at work today but il sleep till 5 pm the next day. Hell I can sleep anywhere.. but it’s not my choice. It’s not for attention. And it’s not from anxiety. You can’t fake ataxia or a lack of reflexes or my pupils being unequal and not properly reactive. Society makes you feel like you make it up or exaggerate. But they don’t realize how strong people w chronic illness truly are... especially undiagnosed ones. I also know it’s hard for people to understand that you won’t get better. They say u look good. Or how are u feeling. Well what can I say. I feel like freaking crap. I have to look on the bright side. My sis reminds me.. well maybe you’re not ready to hear it. (The diagnosis). Which is prob very true. Ignorance is bliss...
I totally understand what your saying I've been chronically ill with c.diff for 11 months now and I'm getting to the point now that I dont like talking about it because people do alot of the stuff your saying to me and it's very frustrating and hard 😥 thank you for this video 💚
So good! I totally agree with all of these!! Thanks!
+J Mobley So glad. Thank YOU!
Mandy, this was fantastic and absolutely spot on. I'm 55 and have been through about every hard thing life can offer. For the past 8 years that has been 5 major surgeries, "terminal" cancer with record setting chemo, radiation, immunotherapy and finally an allogeneic stem-cell transplant. The bad part really hit after the cancer battle was done, cancer survivorship or sequela. The last three years I've been epically, chronically sick. I myself stay very hopeful, grateful and determined, and am the opposite of a complainer or whiner. But the biggest shock to me was the horrible things that happened with people - especially the ones I thought were life long friends. Really no one can handle it, not even my adult children. I've even come to terms with that, but the things you cover cut like a knife over and over. We all try, I imagine, to follow as disciples "father forgive them, for they know not what they do." But it is challenging to both protect our hearts and fully have compassion. And I agree especially with you that I want other people to tell me when they hurt or are unwell. I don't go through life thinking my pain is bigger than your pain. May we all find relief, and you are in my prayers tonight. Bless you for posting this.
Marc McKenzie I am SO sorry you've had to experience the worst side of human nature with illness. I can relate.
I have a rare autoimmune disease. I was diagnosed 16 years ago. It's not curable. Mine has been progressive. I worked for years in a high stress corporate profession. It was glamorous at times (to others LOL!) but I worked very hard & long hours. Traveled alot for my job & met lots of great people. Bought my first home. It was small but mine! Saved for retirement. Had emergency savings, etc.
The minute I became bed-ridden for 2 years, & unable to work, I was literally thrown away like a piece of trash by: My stepmom, brother, twin sister, & two best friends of 23 years. I'm 48 years old & my family was highly dysfunctional in the first place.
Not my dad though. He had Parkinson's Disease & called to check on me often. We were very very close. But he died suddenly on my birthday 2 1/2 years ago.
I live alone & not only was I very very sick, my heart was SHATTERED by all these events. Not just broken. Shattered. 💔
I'm still sick but living on long term Disability through a policy I had at work. I had to sell my home, give up my career of 25 years, & plowed through my savings & 401K. I do it ALL alone.
I've been waiting for Social Security for almost 3 years. I don't even have medical insurance this past year. My family knows my plight but they never even call to check on me.
I was VERY popular with these people when I was a "winner" & moving up the corporate ladder. WTF?!
I still have best friends but do not trust people like I used to, & am cautious of what I say or how much I talk about my disease.
Just wanted you to know you're not alone. Alot of people are terrified of becoming as sick as you've been, or as some of us have been. They can't handle it, & it's like they think it's contagious or something.
I wish they understood we're terrified too. Our lives have been turned upside down. Being sick all the time is like playing a never ending game of Whack-A-Mole with no prize at the end. 🙈
You REALLY do find out who your friends are, & the revelations can be startling. 😦
Thank you so much for this video!! I have fibro, too and I don’t even feel like telling people, because of their reaction, and I don’t wanna explain everything
Such a great video Mandy!! I’m dealing with Hashimoto’s disease. I have two kids under two and it drives me crazy that people say my pains are not in fact flareups but rather just being a new mom. How would you know if you don’t have this illness? It’s invisible so I guess it’s whatever people see on the outside. Also, I often get told that I need to claim healing and not this illness. This drives me crazy! I understand that we shouldn’t call it ours but we deal with it on a daily basis and hearing it from someone who doesn’t have a chronic illness is so very frustrating. Great video!
+Bellina Thank you! Oh man, I so relate! Hugs! 💜
You have hit the the nail on the head with this comments on this video much more needs to be said about this topic have a wonderful day🎈🧨🎆🎈🎈♥️🌞❄❄❄❄❄❄
I did an instagram post on this yesterday and it's amazing how many people have had the same things said to them. I've had crohn's disease for over 12 years now and i still get the "you don't look sick to me" phrase
Suuuuch a great video, thank you so much for that. I think I have heard all of those too. I sometimes just can´t take it when people even ask how I feel, cause surprise, its CHRONIC illness and its still there. Unless of course I had received healing, which sure to know I would be so happy telling EVERYONE, but until then, nope, I am not feeling better, even though I went to bed early, even though I don´t look sick and even though I am pushing through the days and not complaining 24/7. Somehow people also think one doesn´t feel so bad if not complaining or saying how bad one feels. 😡oh well, sooo good to know there are others out there knowing how I feel. I wish we could hang out and watch netflix together, but I´m miiiiiles away 😎
One thought I had today actually was that I really have to be careful about how I think or act as a response to such "comments" I get, for example when someone else tells me they are tired or have had a headache for two days in a row, not to think "yeah I wouldnt mind it for two days, or now you know how I feel EVERYDAY", do you know what I mean". Its so important for me to keep my joy and my eyes on the Lord and still be empathetic with others not feeling well.... anyway, that was a loooong comment 🙃 Praying for you! x
+Sleepmusicforbabies I definitely relate! For real. The whole world is going to know when I’m feeling better. I’ll be shouting from the rooftops. 😂😅🙈 Loving your long comments!
I love this video, I feel the exact the same way, (I have chronic stomach pain) and this video is so perfect!
Soft hugs. I’m with you.