15 Things Not to Say to Someone with a Chronic or Invisible Illness

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Invisible illnesses are illnesses that you can’t see just by looking at someone. Things like Type 1 diabetes, Chronic Migraines, Lupus, Postural Orthostatic Tachycardia Syndrome, which I live with, and Fibromyalgia, may not affect your appearance, but they affect how your body functions and feels. Every day. Probably for the rest of your life.

When you say the following things to someone with a chronic illness, you probably don’t mean to hurt their feelings. A lot of the time you are just trying to understand or sympathize. Well, from the perspective of someone who lives with a chronic illness, here are 15 things you should never say to someone with a chronic illness:

 

1. You don’t look sick

Not everyone “looks like” what is happening to them. You would never say “you don’t look like someone who is going through a terrible divorce” if your stressed out friends still manage to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly. 

  

But you don't look sick - Invisible Illness

 

 

2. You’re too young to be sick

I get this one more than #1. You can get ill or go through any kind of stressful situation no matter your age. Age is completely irrelevant here. Young, unfortunately, does not always equal disease-free. When you tell someone they’re too young to be sick, it just makes them feel even more guilty or embarrassed for having an illness they have no control over when society expects them to be healthy.  And, moreover, just because you have an illness, doesn’t mean you want to be called “sick.”

 

3. Everyone gets tired

That may be true. And most people are not getting enough sleep and rest. But the difference between someone with chronic illness associated fatigue and an otherwise healthy person is the level of fatigue. If I go out drinking with friends and stay up late, it could take me a week to recover. I have to carefully plan every activity of the day so that I can save energy to do all of them. The best line I’ve heard for this one is: you don’t know what fatigue is until you’ve had to rest after taking a shower. Unless you literally think to yourself “how much energy will that take?” for every single action you take during the day (including brushing teeth, combing hair, standing to do dishes, putting on makeup, cleaning, driving, etc.) then you experience a completely different kind of tired than people with certain chronic illnesses. I’m not saying you aren’t tired. Everyone does get tired. But my kind of tired is not the same as a healthy person’s kind of tired. If I push myself past the amount of energy I have in a given day, the consequences are pretty bad. See the spoon theory for more about this one.

 

4. You’re just having a bad day

I know you are trying to motivate someone and make them feel better when you say this, but it doesn’t come off like that. Personally, only about 10 people in my life see me on my bad days. If I am outside, dressed, and active, that is a good day. So instead of making someone with a chronic illness feel supported and motivated when you say this, it feels like you are brushing off their symptoms. Chronic illnesses are with you for life. You can change your lifestyle and find treatments to help them, and some of them can be “managed,” but for the most part, that person will have to deal with a lot of bad days for many years to come.

 

5. It must be nice not having to go to work/school

This one. Oh man. If you only knew. Sure, it can feel that way when you take a day to play hooky or a long vacation. But when you are forced not to go to work or school, even when you want to be there, it is a different story. People with chronic illnesses don’t want to fall behind in school and fight with the school district to get the accommodations they need. People with chronic illnesses don’t want to miss work and not be able to generate an income. Everyone wants independence.

Personally, I loved school and hated every day I wasn’t there. It is way more stressful not being in school and knowing all the work you will have to do to make up for it than being there on any given day. And I have loved the jobs I’ve had and been sad about every day I have missed. Believe me, it is not nice having to stay home instead of being productive, just trying to find ways to distract yourself from pain or exhaustion. It’s fun to watch TV for a day or two, but after that, I feel trapped. I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job.

 

6. You need to get more exercise

Exercise is really important and no one is denying that. It helps pretty much any health condition. But it isn’t a cure-all. For someone like me, whose heart rate regularly reaches 120 bpm just from standing still, exercise isn’t always doable. I do “exercise” but it is more like physical therapy exercises than what most people would consider a good work out. But remember, everyone has limitations. For people with chronic illnesses, their physical limitations may make it harder for them to do traditional exercises. And even if they do, it will probably not be a cure for a condition that is caused by something totally different like an immune system that attacks itself or a nervous system that doesn’t regulate itself correctly.

 

7. I wish I had time to take a nap

See numbers 3 and 5, which relate to this one. To someone with a chronic illness, to whom napping is not a luxury but in fact a necessity, hearing someone say this is as much a slap in the face as hearing someone say they wish they could take a break from work or school too. Hearing anyone “wish” they could have a part of a chronic illness just shows how misinformed they are when they say this. Wishing you had more time is pretty much a universal wish. But wishing you had the time that a person with a chronic illness has is not the same. If your wish is granted, you can get more time, but you also have to get the pain, the exhaustion, and the difficulty figuring out how to be productive in society. Remember that next time you have the desire to say this.

 

8. The power of positive thinking

Positivity is really important and having a negative outlook can negatively affect an illness. But having a positive outlook will probably not cure it. I’ve gone through all the stages of positive thinking and denying my illness. I have thought, if I just put my mind to it, I can do that. And then I’ve suffered the consequences of pushing myself beyond my limits.

Positive thinking that is productive for chronic illness sufferers is not telling someone that thinking positively will help them with their symptoms. Instead, productive positive thinking is finding the positivity that comes with their illness. For me, if I hadn’t had POTS, I wouldn’t have gone to Lake Forest College to stay close to home and my doctors. It was there that I learned and discovered my passion for environmental studies and met the love of my life. I wouldn’t have found an inner strength in myself and learned to value the time I have in the same way I do. That is productive positive thinking. But it’s not a cure.

 

9. Just push through it

Hearing this makes me want to hit my head against a wall. This goes along with #3 “Everyone gets tired/ headaches/ back pain/ insert symptom, just push through it.” The problem with this statement is the underlying assumption that a person with a chronic illness is not already pushing themselves. Every day I push myself. I push through my symptoms all the time. If I didn’t, on my bad days I would not eat, walk, or shower. And the same is true of anyone with a chronic illness. Remember: there is a difference between pushing and pushing past your limits. Pushing yourself is good and necessary. But pushing past your limits can set someone with a chronic illness back for a while as they recover from overextending themselves. Suggesting to someone to just push through it may not feel insulting, but it is like telling a marathon runner to just go faster on their last mile.

 

10. It will get better, just be patient

I’m sure everyone who says this truly means well. And it is true of a lot of things that patience is important. But not all chronic illnesses will get better. Patience is a virtue, and an important one. But please don’t say this to someone who has an illness that they will have for their entire life. It could get better, but it also may not. So figuring out how to live within the confines of your illness and make the most of it is more productive than expecting to get better. This is not to say that you shouldn’t hope to get better- just that you shouldn’t count on it. That’s denial.

 

11. Have you tried ____

… the paleo diet, acupuncture, super magic moon crystals, this weird new therapy that I heard about one time but know nothing about? Unless you are a medical professional and/or a person with a chronic illness has asked for your advice, please keep it to yourself. I haven’t tried super magic moon crystals, but I have tried just about everything else including alternative and new treatments. I’m actually trying a new one now. And I probably won’t stop trying because science makes advances. But someone with a chronic illness doesn’t want to defend themselves to you on how they have already tried or don’t trust the efficacy of a certain treatment, especially if your evidence is only anecdotal. I know you probably mean well and are trying to help, but just assume that someone with a chronic illness has tried every option available to them. Everyone wants to feel good.

 

  

12. You should stop ____

See number 11. I know you mean well and you want to help. Everyone has bad habits they should probably stop. Did you know that one of the parts of my treatment is to increase sodium in my diet? So if you want to tell me how you or someone you know of feels so good because they cut out salt, it will go in one ear and out the other. What works for one person does not always work for another. Please keep your unsolicited unprofessional anecdotal medical advice to yourself, because you are wasting your time and possibly insulting or discouraging someone with a chronic illness.

 

13. It’s all in your head/ you’re just stressed/ depressed/ anxious

If I had a nickel for every person (including doctors) who told me this before I was diagnosed with POTS (and some afterwards) I would have really heavy pockets. I guess when we don’t understand something and don’t look physically sick we assume it is mental. It must be cultural or part of human nature based on how often this is said to people with chronic illnesses. Stress, depression, and anxiety can all make symptoms of chronic illnesses worse. But they do not usually cause them.  Chances are when you say this to someone you are only contributing to their stress, not helping them see something they never saw before.

 

14. You need to get out more

A change of scenery can do some good. And I believe that spending time outdoors is good for your health. But when you say this to someone with a chronic illness, it doesn’t sound encouraging. Someone with a chronic illness wants to get out more (see number 5). All it does is make them feel guilty for not being able to do something they already want to and are probably trying to do. So before you say this, remember that they probably agree with you and they don’t need the guilt on top of it.

15. You take too many medications

People differ on their opinions of whether medications help or are bad for you. In some cases they are medically necessary. This is one of those things where you should probably keep your judgement to yourself. If I take a medication, I have researched the side effects and I have tried every other lifestyle change and vitamin that I can before I get to that point. Not everyone wants to just pop a pill to solve a problem. If someone is having a symptom that is controlling their life medication is sometimes the best way to manage it. People with chronic illnesses do many things to try to live as normal life as possible, and medication is one small piece of that puzzle. It is part of a lifetime of adaptations, treatments, and figuring out how to live with a chronic illness.

So now that you know better than to say these things, you can relate better to the people in your life with chronic or invisible illnesses.

And remember: the absolute best and most powerful thing you can ever say to someone with a chronic or invisible illness:

I believe you.

 You would be surprised just how much that will mean to them. 

 

*A version of this article originally appeared on Pins and Procrastination.

Susie Helford is a Chicagoland-based blogger writing primarily about homemade green cleaning and beauty products. Her blog, Pins and Procrastination, is about pinterest-inspired projects (that also happen to be great for procrastination purposes). She lives with Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia. 

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Comments (71)

  1. Thanks for this great post. I wrote an article at Psychology Today that had many of the same comments in it called “What Those with Chronic Pain or Illness Don’t Want to Hear.”
    I’ll put in the link in in case readers would like to see it too. I then followed it up with what we WOULD like to hear! Here are the links to both of them and thanks again so much:

    http://www.psychologytoday.com/blog/turning-straw-gold/201206/what-those-chronic-pain-or-illness-don-t-want-hear

    http://www.psychologytoday.com/blog/turning-straw-gold/201207/what-those-chronic-pain-or-illness-do-want-hear

    Warmly,
    Toni

     

  2. Jane Morris at

    Excellent, excellent summary, Susie! Very good descriptions of what we go through. Thank you.

  3. Shannon at

    I totally agree with everything, but…

    Let’s not forget that depression and anxiety can also be chronic illnesses – and debilitating ones at that.  So, when people say, “you’re just depressed” they are actually doing a two-fer negative (especially considering that many people with chronic conditions develop depression, even if it is not chronic depression).

  4. Jessica at

    I’m totally with you on that Shannon. Psycological illnesses are also one of those things where if you look fine, you don’t count as sick. You just need to push through. What does that even mean? I think most of the things you describe I’ve heard about mental illness. People don’t realize that it doesn’t work that way. You can’t “just” push through. On a bad day the simplest of tasks can seem too much and if I have to do them I need to plan it well. 

  5. Yes. All of this. But let me add to #13 that there is no such thing as “just depressed.” Depression is just ANOTHER of the chronic illnesses that I have to deal with, and though it manifests mentally, it is also a biologically based illness. Same with anxiety. Because if it were simply a mind over matter thing, I wouldn’t need Ativan to stop a panic attack. Ativan would make me feel high instead of just bringing me back to baseline. 

    I need to step off my soapbox before I unleash fully here. I went on TV to talk about this, and it was a miracle I was able to respond calmly when another woman suggested I would just “throw pills” at my son to avoid having to be a parent. With the implication that I was taking the easy way out by taking pills and not just taking deep breaths in the laundry room or something.

  6. Dear Susie,

    Great article! Your forgot one …. “Oh, you look great—did you loose weight???” This was said to me after my bowel resection in 2006 when I was lucky to be alive and weighed only 117 lbs! (I now weigh a healthy 140 on my 5 foot 8 frame!). So, just my two cents 🙂 

  7. Louis Agre at

    You forget “I know someone that had what you had and they died/got better” . Unless you were my doctor you do not know anything about what I had. 

  8. Erica Hendry at

    Great post. I’m getting fed up with people saying “do you still have arthritis” Or “You’re too young for arthritis” Also the look of shock and horror and unwanted advice I get on divulging that I have to use morphine at night for pain are really staring to get to me 🙁 Honestly, they act like I went out and bought it in the street and am injecting it lol. I have yet to get “you must be in a lot of pain” or “does it help”. Anyway that’s my wee rant over, sorry folks!

  9. Skogula at

    As someone living with a brain injury, I’ve heard #1 so many times, My typical response has become “That’s funny, you don’t look like an insensitive jerk”

    I’ve talked with a number of people with brain injuries, and a number of them have expressed sentiments to the effect “I wish I had lost my legs/arms/etc. instead. Then people would be able to SEE the disability” because a number of people seem to think that if they can’t see what’s wrong, then you must be faking it for attention, to be lazy, or whatever other sin of theirs they want to project. 

    At least I can whip off my hat and show people the brain surgery scar. A number of my friends received a brain injury in some form of accident so the damage is truly invisible.  (I started wearing hats when someone came up to me in a restaurant while I was eating and started asking questions about my scar)
     

  10. Kathy boisclair at

    Thank you!  Cancer and Multiple Sclerosis here.  Name doesn’t matter.  I am exhausted and depressed and wish I could gather my thoughts as well as you have.  I set an alarm to take pain meds then go back to sleep so when I wake up the next time, I can put “boots to the ground”.  Try to stop crying long enough to make phone calls.  Yes, I am still alive, no thank you I don’t feel like getting dressed, no it won’t make me feel better it will make me feel worse.  I really don’t care, I mean I really don’t care. I used to be so intelligent and have aged so severely recently, yet another reason to stay where people can’t see me. My make a wish would be a trip on Amtrack, the one my Dad and I were going to take 40 years ago just before he passed.  But they wouldn’t allow my dog, Izzy.  Izzy and I are about the same, seniors with issues.  Starting to ramble, I’m so sorry.  Thank you for your words and I am so sorry that you are going through all of this crap.

  11. Beth at

    Amen sister! Even better when your doctor tuns out of actual treatment options and says these as a guess at what to do – then realizes what a dumb thing it is. Surely,  if I just did yoga my spine wouldn’t be dissolving right? Yeah.  Right. 

  12. Good post. Everyone of these statements are an extension of what I call “Noisy and Irritating” Syndrome or tunnel vision. Some things you only know from experience or having empathy. Patience is not a virtue it is a survival skill. Take care.

  13. Booboo at

    When people come up with all these things that have worked for them, it’s hard not to respond with “yes, well, reading and research have done wonders for MY ignorance, maybe it can work for you as well!”

  14. Tonette at

    You hit this on the head so well,I was almost in tears.
    I call the people who say such things,”Health-Snobs”; they have no  clue.How I wish they could experience any of what we go through, for their souls’ sake. I had never believed in support groups until I got hit hard with multiple AI disorders.Healthy people are incapable of understanding.

  15. Barb at

    Thank you for an excellent post which I have shared.

  16. Olivia J Eagan at

    This is Awesome. I was recently diagnosed with cancer, and Ive also been dealing with endometreitis, I have heard pretty much all of these. its very frustrating!! I am so maing copies of this..might just hand them out.

  17. Betty at

    Let’s not forget the…….”IF you could just lose some weight… that’s all you really need”……     I’m not but a little over weight,   I’m not flat out Fat.  When I’m totally exhausted to the point of really being in pain, and half way sick from it…that’s when my own mother says…  “But you need to keep pushing…because you can’t stop….You have to keep going”   NO I DON”T  

  18. Catrina at

    Thanks for everything above! I have RA and have experienced all 15 plus a few more. I’m 35 and also hear, ” Your getting old. I’m in pain and I just learn to deal with it.” ” It comes with aging” or ” I have that in my knee” ” All I take is Tylenol and it helps with the pain.”  I stopped trying to explain the difference between RA and OA.  I also keep the fact I take narcotic pain medication to myself because I hate all the lectures that come with that. A lot of people are truly trying to be helpful, but misinformed. I know when it’s worth my time to explain/educate or not. I had a coworker who would give me “my friend did this” or ” too much medication causing you more problems.” I think that she wanted me to come to her and say, “You were right, smarter then my rheumatologist, I’m so much better thanks to you.” I find that the only people who understand are those in the chronic/invisible Illness boat. Even doctors don’t understand exactly what the day in day out is like, unless they are on the boat. What they have is knowledge and education. My rheumy the past 3 years is very compassionate. I’m glad I found him after a year of going through doctors who were kinda jerks. 

  19. Kathleen at

    Thanks so much for that wonderful summary.  Especially the comments on fatique.  Going on 14 years struggling with an autoimmune disease.  Am envious of people who can just walk without having to think about it, how far they can go, for me about 2 blocks or how long they can stand without sitting, about 4 minutes, or how long it will take to recover from lifting light weights before your muscles stop aching.  Along with Scleroderma, RA and diabetes I sure do mourn my healthy body.  And try to be patient with those who don’t have any concept of what a chronic disease its.

  20. Liz at

    You notice people with a brace or bandage, don’t get please explain as they have something to show for their ailment, but if you suffer chronic back pain, depression, or something that is internal (nothing physical to show) you are asked the questions with a bit of doubt thrown in. 

  21. alz at

    Skogula, I hear ya there. As a fellow brain injury sufferer, I have heard all these and more. It isnt easy to just endure the pain/side effects, let alone all the comments that people say or use. It makes a person want to lash out after a while, but that doesnt accomplish anything either. My injury is non visible, did not leave a permanent scar. So I have heard, “I dont see where you got hurt, it must not have been very bad, right”  with the pain/side effects being NOT limited to motor nerve control damage, cognitive reasoning, memory loss, etc.. I was real lucky to have some really awesome therapist to help retrain some of my pathways to live a somewhat ‘normal’ life. I dont even need someone to take care of me now. Still have loads of problems, but am alive and loving it. 

  22. Kara at

    Thank you for this post. I have Cystic Fibrosis and get asked/told these things all. the. time. It’s good to know I am not alone. 

  23. Shannon at

    On suggesting treatments, I do mostly agree, although I find I’m often willing to listen to non drug treatment suggestions from people who have a similar condition. Ive had chronic migraines since my teens and now twenty five years after onset have finally been sent to a specialist and am being treated propery, I also have chronic back pain that requires surgery I can’t have so I do find in both cases people who personally suffer the same conditions are worth listening to. People who mean well but have no personal experience or medical degree are not.

  24. Tracy at

    I have anxiety and depression all the time. But every once in a while Cancer pops up and I have to deal with that also. I am currently recovering from the beginning of my breast reconstruction. People just don’t understand how painful this is and how depressing pain can be. How much you don’t want to get out of bed or talk to people or even move. I have some “health snobs” around me and trust me, none of this was caused because I’m overweight. I would add the lovely “If you just put all your faith in God, He will take the burden from you.” Love that one. You hit the nail right on the head with these. May your life be happy and full. Peace.

  25. Joy at

    Thank you so much for sharing these things. I wish they could be posted where EVERY well-meaning person could read and meditate on them!  Unfortunately some of the worst comes from our own families. 

  26. Oh, wow; these are really good!  I like the line about taking a shower.  It’s ridiculous how many days I do not take a shower because I know if I do I won’t have any energy left for anything else.

    I do, however, have to disagree with #11.  I would never expect someone to assume that I’ve tried every option available – just the ones I know about.  And it very well could be that the one thing they think to mention is the one think I haven’t heard about yet, that will change my life.  So definitely, don’t push it or argue the issue!  But I have no problem with a simple, “have you tried _____?” or “are you familiar with ______?”

  27. Jackie at

    Everyone should read this article. I have Sarcoidosis and Morphea and have to deal with comments like this constantly. My most dreaded though, is hearing “Oh, you’ve got THAT. My brother’s wife’s best friend’s cousin had that, and SHE’s FINE!”
    Grrrr!! Education on invisible illnesses is so important.  Thank you.

  28. Susie, this is such a wonderful article on such a difficult topic. I have lived with a double diagnosis of autoimmune conditions for nearly a decade and still so many friends and family struggle to fully understand what I am going through. I have shared your article on facebook as many others have in the hope those who are unaware will learn something from this. Thank you so much! P.S. I added my own commentary – “”Invisible Illness” is very real – take it from someone who lives daily with an autoimmune condition! This article will help those who live life unaware to understand just a little about what it’s like to live every day with constant pain and prolonged periods of extreme fatigue. Remember most of these “conditions” take years to diagnose and the majority have no known cure… but we learn to manage and not complain for the sake of those around us and more importantly – our own sanity. Spare a thought for anyone in your life who has been diagnosed with an invisible illness!”

  29. Laura Whittle at

    Wow, thanks for an excellent article. I have several health issues. Any one of them alone is doable on a daily basis, but five combined into one body is causing me to have to create a new normal for my day. And nunber three is my kind of exhaustion

     

  30. yep…  have heard just about all of them…  Thank you for the great article…  hopefully people will learn from this…

    My personal favorite….  When I told a “so called” friend I was DX with Multiple Sclerosis….   They said, oh, do you remember Joe Blow?  He has had MS for over twenty years now and he is just fine….  My smart ass remark….  Hell, I sure wished I was Joe Blow, because I’m falling apart…. lol.  They sincerely 

    I’ve learned over the years to be more compassionate
    to others insensitive comments.  I defended myself and tried to educate people until I was blue in the
    Face.  Hell, I knew nothing about MS prior to my DX… now, I’m unfortunately an expert.  So I seriously just ignore the ignorance.  It can be difficult at times but doable.  Anyway, the people that matter the most to me, understand (to the best of thier ability) 
    and for that alone, I’m grateful.
    The rest I dont let get under my skin… 

  31. Thanks for this! I was also sick for awhile and wrote something about how not to be a jerk.
    Everyone needs to know these things!

  32. Jazzy at

    Is there some way I can copy the “But you don’t look sick” ecard to my Facebook page? (When I try it just puts the link.) Thank you!

  33. mikki at

    Hi. This is so relevant. I was 10 years old when I was diagnosed with Lupus. And when teachers yell at you for no playing sport or walking around with an umbrella it can get pretty annoying.

    Great article! !
     

  34. Frances at

    Great article.  However, I for one, do appreciate when people make suggestions about ways to treat or compensate for the different illnesses I suffer from, and wish more had cared enough to invest some time and thought in this fashion.  

    Most doctors (and I’ve been to many, allopathic or natural) don’t have a clue when it comes to certain illnesses, especially when one suffers from more than one.  They don’t have much nutritional training and push too many drugs which deplete the body of the life-saving magnesium that is too low in most people due to stress and low mineral foods, heavy metal interactions, and poor digestive function.   Too many people emphatically trust their doctor when his vested interest is in the money made from prescribing more and more drugs and not really personally caring about that person for the long term.

    For the most part, I find that people who share what they think will help are AT LEAST spending time talking to you and brain energy demonstrating that they actually care.  One can always praise that person (for they deserve that for trying) for their suggestions and answer truthfully that this or that was tried and doesn’t work and that you are now looking into this.  This keeps an honest caring conversation open.

    Too often, the cure really is nutrition and rebuilding the digestive lining because it isn’t absorbing minerals and vitamins and most drugs are not meant to cure, but only alleviate symptoms, but most people do not “get” this.

    While an avid researcher online for solutions to my health problems for years, it is only through non-stop researching that I have found certain closed online groups where the people sharing what helped is what is finally helping me after 10 years of suffering.
     
    No one in these ten years has ever bothered to suggest anything to me. They were always too busy or uninterested because they live the life of being too busy for relationships… and I think, because they didn’t believe I was sick because I always “looked healthy”.    I’ve lived alone extremely lonely and depressed after reaching out to many people and searching for new friendships.  I wish I had the  luxury of conversation with people who were at least trying to help. I’d hate to think that now when I’ve found solutions that work to heal, instead of keeping people stuck on drugs, that they someone chronically ill would not be open to learning about them.  

    After all, these chronic illnesses for the most part did NOT exist prior to the degradation of the farming business, processed foods, gmo’s and the pharmaceutical industry taking over the airwaves and doctor’s wallets.

  35. Nancy Houghtby at

    Pain Meds are another.  They are not accepted in society and people think you are taking them for fun and put you in the “junky” category.
    i have lost a couple good friends because I have told them. 

  36. Hilary at

    They should add, “you have so many blessings you should be happy for.” I’ve suffered from chronic back pain due to arthritis in my spine. The only reason I don’t  smqck people who say that is because I can’t afford a lawyer.

  37. Halle at

    I was feeling really sad this morning, when I came across this article. Thank you! It really helped to read it. 

    I am 65.  I got Grave’s disease at 38, and from there, it has been a constellation of issues, from Fibromyalgia to a ruptured disc, acid reflux resulting in painful speech for 9 years and resulting surgery, Meniere’s Disease, and now, as of last year, Atrial Fibrillation.

    I “look” young for my age.  I can walk and talk and smile and laugh. I am great with makeup and clothing so that I look better than I actually feel every day.  

    I am currently sad because a friend asked me to a concert and I accepted.  I found out that other friends of hers are coming (that’s fine) and that they ALL intend to walk to the concert – a good two miles to the venue and straight uphill at one point – very, very steep.  Now, I am a “problem” for them because I said I cannot walk to the venue, and they  refuse to ride the free shuttle bus, and refuse to let me ride it alone, so they are scrambling to “find me a ride”.  I am embarassed, and sad, and feeling left out.  These same emotions I have felt, off and on, since I was a much younger woman.

    It helps to read these comments and know that I am not alone.  It can be very lonesome sometimes……hugs to all. 

  38. Elle at

    Thanks for writing this article. All of it is so relatable. I, also, have Postural Orthostatic Tachycardia Syndrome (I usually just call it POTS – such a long name!), and, as silly as this sounds, I have simply never met or been able to talk to anyone else dealing with it. Though I wouldn’t wish any of these invisible conditions on anyone, it is so comforting to read another story like my own. I’m so tired of having to explain my condition and see if the person I’m talking to will do me the favor of believing me. Best of luck!

  39. Connie at

    Each one of these comments are spot on. I was 16 when diagnosed with SLE (Lupus) and have suffered horribly for the last 38 years. I’m sick and tired of being sick and tired. I feel like my mind, body and soul is completely worn out. It is a daily ordeal just to exsist muchless get to do any special events or occassions. I would love to have a nickel for each time someone has said one of these comments to me; I’d be a millionaire. Thanks for posting this; maybe some people will quit making these ridiculous remarks.

  40. Jen B at

    Great article, but I have to say that I’d find “I believe you” just as insulting as everything else on this list. My illness (M.E.) should not be up for debate or to be believed in. Belief does not make my illness valid, the fact that is recognised my the world heath organisation and diagnosed by a qualified doctor, does. If someone told you that they had cancer you wouldn’t dream of telling them that you “believe” them, you’d just accept the diagnosis.
    Sorry for the rant, but I’ve talked to people that don’t think my illness exists in the first place, let alone that I have it.

  41. chel d at

    Neurosarcoidosis And hyperthyroidism here. I’m sick of anyone who gives advice or has the “latest” natural way of fixing me. 11 years later…I’m not fixed.

  42. Emma at

    Oh my goodness you hit the nail on the head with this article. I have Meniere’s Disease and am constantly being told what to/not to do by people who have not a clue about my condition. I know they all mean well but arrrghhh… I used to walk with a cane and it helped me. Everyone who walked passed me judged me. In the beginning I just wanted to walk with a sign around my neck saying, “I’m chronically ill. I’m sorry I don’t fit into your social norms but I will take you out with my cane”.

    I would like to add another I find that doctors always say the following: “but you’re well today so it can’t be that bad”;”one day it will go away” and “better to have it today than fifty years ago”.

  43. Teresa Chapman at

    You know, so-n-so is terminal and rarely talks about his condition. It makes it easier to be in tune with it, makes it easier to be compassionate. When you hear/see the same thing over and over and over for years it takes its toll. And no, I’m not downplaying the seriousness of you illnesses. They are real and they are bad. I just cannot do anything about them. Nothing. I don’t know what to do after that, I’m at a loss. So I just don’t talk about it. You are just so consumed with your health, and have been for many years now, that it’s changed you. ~ This was what my supposed BFF wrote to me. And this is just the tip of the iceberg of the hurtful, awful things she has said to me. Of course the friendship we had is no longer at the BFF status. Friends do not say these things to their best friend of 43 years. EVER.

  44. Anon at

    I was wondering if chronic kidney disease counts because I can seriously relate to all of the above, especially numbers 8-9-13! Drives me crazy. Thanks for the article????

  45. Vic at

    At the risk of falling foul of number 11, I see so many issues mentioned in the comments both physical as well as psychological/neurological that could be explained by mercury or other heavy metal toxicity which gives symptoms like a very wide variety of chronic conditions, POTS included.
    I have only just self diagnosed this after decades of issues. My doctor was open to the possibility after ruling out other things in tests but clueless as to the pervasive destruction brought on by amalgam dentistry. I am in the process of having them replaced and will enter a period of serious detoxing which could take a year or more.

  46. Meg at

    Thank you so much for this article. I can relate so much to most of these. I have suffered nearly 30 years since my late teens with depression and anxiety, and I was diagnosed 5 years ago with congenital hip dysplasia, after suffering from my late 20’s with sever hip pain. I also have chronic back pain related to my hip condition. All are seemingly invisible illnesses, all make just getting through a ‘normal’ day so difficult. I am stubborn and refuse to let any of these conditions rule my life. I continue to work full time but the hardest part is when the pain and/or depression become too much to bear and I have to take some down time, is seeing the look on peoples (bosses) faces when you try to explain why you had to take time off work and you just know they don’t really believe you, as most of the time they don’t ‘see’ you having a problem.

  47. Liz at

    Magic moon crystals. Too funny. I probably would have tried it 10 years ago, I tried pretty much everything else 😉

  48. pete at

    5. It must be nice not having to go to work/school

    This one is a case of the grass is always greener. I’m sure you’d love to go to work. I’d love to stay in bed. Just because I’m getting to do what you’d love to doesn’t mean I love it. Draggin my sorry ass out of bed early every day becuase I’m the only earner in the house so have no choice isn’t what I’d describe as living the dream either.

  49. Jan W. at

    I get some of the worst comments from my husband. He causes most of the stress that cause flare-ups. I even feel guilty sharing this, because a ‘healthy’ person could work and get out of this situation. I cannot do this. And to Pete, GROW UP!!!!

  50. Emily at

    Thank you for this post. I agree 10000%, and I actually just posted something similar on a blog I have started about my own illness: https://lifewillness.wordpress.com/trying-something-new/

    Thank you for giving words to those who may be in the phase of their illness in which they cannot speak or verbalize what is on their hearts.

  51. D at

    These are all good because I have heard some of them, and it is frustrating. But on the other hand, I would love to see more articles with suggestions on things that should be said. If we always focus on what not to say, the person may not want to tiptoe around everything and completely disappear rather than actually being a good support person. Sometimes people truly want to help but don’t know how.

  52. Meghan at

    Thank you for posting this. It’s nice not feeing so alone in my struggles. None the less find it put in words that anyone can understand (as I would hope they do). We all struggle many want to help and many struggle helping and or receiving help from others. I’ve been through a lot for being 26. Age doesn’t matter. Support is key but feeling alone is difficult and I struggled Connecting with my friends about my illness. In fact I alienated everyone canceled my phone and never responded to messages. Why would I want anyone to see me sick? It is a struggle. I think this helps others undrstand more about invisible disease. I welcome anyone to message me for any questions. I have type one diabetes with gastroparesis and a Medtronic gastric pacemaker. I wish, when I was at my sickest, that I had someone to connect with that could relate to me and if anyone sees this needing that connection feel free to contact. Cash4brains@gmail.com

  53. Kristine at

    I always heard that I was lazy, didn’t work to my potential and lacked motivation. I was also told that “sometimes you have to do what you don’t want to do.” Well duh. I have narcolepsy and bipolar disorder, along with severe IBS and occasional postional vertigo. Those comments came from family. Some members don’t believe that the illnesses I have are real, especially the narcolepsy. Never mind the sleep studies I have had, including a polysomnogram to make sure I was sleeping well at night (I was) the night before I had the multiple sleep latency test. Never mind that I had electrodes attached to me for 24 hours to determine this. Never mind all of that!

    I now go to people other than my family if I need emotional support for my chronic illnesses. So I’m appreciative of my family for who they are, but it took a while to get through the anger over their complete disinterest in what I go through. Ugh.

  54. I, too, disagree with #11. I would still be sick to a non-functional degree if I hadn’t listened to peoples’ suggestions. Now some are lame, for sure. When you’ve had insomnia for years, chamomile tea is not likely to help. But LDN? 5HTP? Reducing cortisol? They didn’t help. Neither did the numerous docs I saw. Eventually, getting my thyroid in order, and discovering I was both magnesium and B12 deficient (both REALLY common) and starting treatment, helped me to sleep unmedicated. Pain has reduced somewhat. I am attempting to work again. 7 years ago I couldn’t carry on a conversation or make a joke. Suggestions may be a pain, but they may also be the answer.

  55. Rosalynne at

    I suffer from endometriosis and I have heard every single one of these said to me. Also the ‘You just need to relax, then you’ll get pregnant’ or ‘If you get pregnant then the endometriosis goes away’. I just don’t understand how people think you care about their personal opinions about your illness….

  56. Jim at

    One of the reasons that people with chronic hidden illnesses are often isolated from others is that most people don’t know how to truly express compassion and to merely start by being present to the person who is suffering. I’ve heard most of these and their variations. Another reason for isolation is that if your illness is bordering on a terminal issue or the stress could be injurious then you must eliminate certain people from your personal circle of friends and associates. Healthy people can often be obstinate because they are afraid of dealing with mortality issues so diminishing the seriousness of your condition makes them feel safe. Also they always use the way they experience life as the ultimate reference point. Someone responded about how hard it is to drag themselves out of bed in response to Number 5 and “It so nice you don’t have to work”. Of course many people who have jobs often have job related stress but if you are a healthy person and you complain about working please don’t ever lecture a sick person that they shouldn’t complain and someone else has it worse.

  57. Timothy Velting at

    I have been sick for just over ten years, and have heard all 15. I always hear, ” Well you have had one small, and one large stroke but that should not be causing your shaking, left side pain and weakness. It has nothing to do with you having problems talking or no short term memory. I went to the ER with a lot of pain in my mid right side of my back only to have the ER doctor call me a street bum just there for pain med’s. It was a 4mm kidney stone. No, he didn’t say he was sorry for the rude comment.

  58. Mandy at

    Ok, I when I got to the statement, “You don’t know fatigue until you’ve had to rest after taken a shower,” I cried. I said this very thing to someone just yesterday. Excellent article.

  59. Renae at

    SO TRUE. JUSTIN BELIEVE ME WHEN I TELL YOU I AM SICK!!!!

  60. Walter Snodgrass at

    First of all, do any of your responses, to Susie’s blog about, the 15 things you don’t say to someone that is sick? I was just wandering, because I’m sure most if not, all of you, will chew me out about my thoughts and comments!
    I’m sorry Susie, and most of the people leaving comments here, are sick and have legitimate issues. I know everything there is, about being sick, disabled, and controlled by Chronic Life Altering/Changing Conditions, and I played the venting strategy too, not to the extent of an internet page, but I’ve ran all the different scenarios, through my head, I’ve expressed my concerns to Family and Friends, and my Doctor’s, and live with it! Because I don’t have a choice, just like you don’t have a choice, unless you want to end your life, you’re going to have to deal with it, and suffer through it !!!!! I also want to sit around and feel sorry for myself, and I don’t want to be bothered by anyone, I wish people would just shut the hell up, most of the time! I’m not a “Cup Cake” BABY, that cry and whine, walk around with signs ProTesting/Demonstrating about racism, sexism, religion, I’m not out looking like an AssHole demanding the President of a University, the “Mayor” of a city,and certain Politicians step down from their position, Demanding “Minimum Wage” increases …
    No, I’m a DISABLED ADULT with Chronic Conditions/Disabilities, accepting the fact that I will never get better, and that my “Physical Condition” caused my “Mental Issues” and that I live in the REAL WORLD, where people are going to SAY & DO whatever they want, because the “Constitution” / First Amendment Right, says that they have that freedom, plus they’re just being a Caring, maybe to much, or to little Human Being, and I would rather be surrounded by a Normal Human Being today, than a political correct watch what you say person, that this place is becoming…. Any day!

    Sorry people, but illnesses and physical/mental conditions, are a part of life and it sucks, but please quit freaking griping about it, because it’s not going to change a damn thing !!!! I’m sure you can find another way to vent!

  61. Dave at

    I’ve heard several of these statements and I have been diagnosed with bvFTD a form of dementia. It’s a degenerative brain disease. They can knock me out of my positive attitude for a moment or two. Sometimes I want to snap back with, “go f@@@ yourself!
    Keep writing when you can, thanks for sharing ?

  62. jay at

    People with chronic illness like myself will always have to deal with people’s comments because why would a healthy person read any of this stuff to understand how we feel… if I was fit and healthy I would not read anything to do with people who suffer chronic pain or illness…

  63. Octarin at

    Please add Multiple Sclerosis to this list. Thanks.

  64. Melissa Kiker at

    As a sufferer of bipolar disorder, psoriasis, and psoriatic arthritis, in addition to chronic back pain associated with the arthritis, I find your article to be dead on. I’ve felt the sting of all of these comments, especially #11, lately from my loved ones. I’ve also struggled with depression lately because I feel so stigmatized and misunderstood by not only society but by those who love me who obviously just don’t understand. And I “get it” that they don’t understand, because unless you’re living it, how can you? But it’s amazing how painful these simple “words” can really be to someone who wants so desperately to just be “normal” 🙁 Thank you for speaking my heart.

  65. Susan D at

    Summed it up beautifully – thing is until it all happens to you – ignorance really is bliss – I have a complex heart problem – thyroid issues – severe rheumatoid arthritis – chronic fatigue and now a weight problem – I used to work – I used to run – I used to smile a lot more but despite my body going to war daily the worst of it all is the guilt I feel in contracting a disease I didn’t have any control over actually getting – nothing I could have done brought this on – like most auto-immune system diseases it s the bad luck of the life draw – I feel I let my husband down on a mind numbing level – how marvellous he is though and I’m lucky to have such genuine support but that doesn’t deaden my guilt – lots like me out there – folks just trying each day to keep going – remaining hopefully and bright and onwards we must go as the alternative is unthinkable

  66. SLR at

    My two that have gotten to bother me are “It will get better just give it time” which for a chronic pain disease that’s progressive and spreads through my body and no treatment options coming out, little knowledge or research, is something i cant stand. Its just a conflation of the second one which is my Father telling me flat out i shouldn’t talk about my pain, my bad days, or at least as little as possible because it is hard for others to deal with so i should just “pretend” everything good so that it makes others feel comfortable. Which translates to then they wont feel bad about walking away and doing nothing. I am the one who is supposed to conscientiously make everyone else feel OK so that they have no guilt about the fact that they have walked out of my life, hardly talk to me if they haven’t, or wont talk about the thing that has taken my life away from me.

  67. Jake at

    There’s one not mentioned on here that I surprisingly get a lot:
    “Oh I know how you feel/what you’re going through, because…” And then they go on to tell me about something like having a flu or breaking a bone once. Yeah, you’re right. Your 4 day flu is TOTALLY the same as my chronic, debilitating illness. You DEFINITELY know what I go through daily. (Heavy sarcasm, if that wasn’t obvious enough)

  68. ES at

    I hate that #11 is on here. As a warrior I’ve fought back against this illness and found things that most doctors would never have found if it weren’t for people sharing information. And its someone who is offering help. Yes by all means lets make those people feel bad. Of course there are people with not our best interest at heart, but most are trying their best to offer up something that might help.

  69. Kat at

    Thank you, Shannon (may 2, 2014), re depression and anxiety as chronic conditions.
    Depression and anxiety can also manifest as physical symptoms causing pain and suffering, that is also invisible.
    When discussing invisible illnesses please do not forget about depression, anxiety, and other mental health illnesses. For that too is a reminder that we are forgotten or not accepted as being chronic sufferers, which perpetuates and exacerbates the pain and suffering we have to endure.

  70. 4heva at

    so true,its good to see so many people who understand.i have joint hypermobility syndrome which causes chronic pain head to toe every single day.im on loads of pain killers nerve blockers muscle relaxers aswell as tablets for hyperthyroidism.most of the time i am bed and house bound and because of this all my so called friends ceased contact with me as i could no longer meet for coffee and a chat or go out drinking.i have good days where i can do ‘normal’ things and on these occasions i dont look any different to the next person,although im now over weight and walk with a stick.when i was still socialising the amount of times i had to explain exactly what my condition was and got the responses of “ooh i hate back ache you should have a hot bath” and “have you tried acupuncture?it helped with my migraines”.the tiredness and depression that comes with chronic illnesses is something else.im now quite anxious about going places on my own and dont feel my gp and other professionals believe just how bad it is to have an invisible illness.to top it off ive just had heart surgery to fit a mechanical valve and my condition is very unstable which is adding to the mental suffering.hey ho,guess i’ll just have to get out more after ive had a hot bath and try the new gluten free diet.apologises for the lengthy rant,i dont have human contact much.

  71. I would add
    If you want to say something that begins with “Don’t take this wrong” or “No offense,” just stop. Don’t say whatever it was. Chances are it will be offensive.

    Great post. Everyone hit the nail on the head.

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