15 Things not to say to someone with a chronic illness or invisible illness
Thanks for reading! If you like this article, check out 10 Things You Should Say to Someone with a Chronic Illness.
It’s difficult to know how to deal with a friend or loved one who has a chronic or invisible illness. We learn that when you are sick you treat it and it goes away. Chronic conditions don’t go away. They are hard to understand.
Invisible illnesses are illnesses that you can’t see just by looking at someone. Things like Chronic Migraines, Lupus, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, etc. don’t affect your appearance, but they affect how your body functions and feels. Every day. Probably for the rest of your life.
When you say these 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 a chronic illness sufferer, 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 friend still manages to put on a brave face and pull themselves together. Not all illnesses are manifested outwardly. And chances are, on the days that you are seeing someone with a chronic illness, it is one of their better days because they are out at all. Everyone is going through some kind of struggle in their lives, and chances are, you can’t see it on the surface.
2. You’re too young to be sick
I get this one more than #1. We expect teens and 20-somethings to be the picture of great health. And a lot of people get illnesses as their bodies age. But no one is “too young” to be anything. You can get any kind of illness no matter your age. You can go through any kind of stressful or positive situation no matter your age. Age is completely irrelevant here. Young does not always equal healthy. When you say this to someone who is young 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.
3. Everyone gets tired
That may be true. And most people are not getting enough sleep and rest. But the difference between someone with a chronic illness associated with 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. My favorite 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 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 “cured,” but for the most part, that person will have to deal with a lot of bad days for a lot more years. Hearing this can be discouraging.
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 whole different story. People with chronic illnesses don’t want to fall behind in school and fight with the school district to get 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- you feel trapped. I guarantee anyone with a chronic illness would gladly trade in their symptoms for a full time job. Some people just aren’t physically capable of that.
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 suffer 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 where 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 literally 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 while 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 and I will admit that I made those up, 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. Physical evidence is being found in illnesses that were thought to be “in patients’ heads” all the time. Recent research has found: structural differences in the brains of migraine sufferers and non-migraine sufferers, an autoimmune antibody in POTS patients, and increased sensory nerve fibers in the blood vessels of the hands of fibromyalgia sufferers, to name a few. I’m a huge proponent of therapy and I think it is a good idea for anyone with a chronic illness to get therapy because chronic illnesses can increase stress, anxiety, and depression. But chances are when you say this to someone you are only contributing to their stress, not helping them see something they never saw before. Just because someone suffers from a mental illness in addition to a physical illness does not always mean that one caused the other.
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. Remember- it is not the medication that is making someone sick. Sometimes they have bad side effects- but people only put up with side effects if the medicine makes enough of a difference that the side effects are negligible.
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.
If you enjoyed this article, check out my article on 10 Things You Should Say to Someone with a Chronic Illness.
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60 Responses to “15 Things not to say to someone with a chronic illness or invisible illness”
April 15, 2014 at 2:44 pm
Well said, Susie-girl. You are SO right.
Love you, Bubby
April 15, 2014 at 11:17 pm
Number 11 — YES. Especially if it’s the first thing anyone who’s done any research will try, and they say it to you like it’s a guaranteed cure: “Just do this and this.” I think sometimes people are desperate to help, and sometimes they’re desperate to fix, which are two different motivations. Anywho…
Thank you for writing this!!
Jamie Koala says:
April 16, 2014 at 12:16 am
I resonate with this article so much; thank you for posting it. I don’t think it could have been said any better!
Karen Compton says:
April 16, 2014 at 8:28 am
That was wonderful and beautifully written. Those are such important lessons for everyone to know. I believe you, Susie!
April 16, 2014 at 11:28 am
I shared this on my FB wall and I don’t do that very often with anything that relates to my illness which is Fibromyalgia. You just said it so well! Thank you.
April 24, 2014 at 7:04 am
What a brilliant post! Perfectly written and explained. After nearly 6 years with diagnosis of CFS/ME, I’ve just had a re diagnosis of Ehlers Danlos syndrome, and so now can have tests for POTS. It’s incredible the difference a diagnosis makes not only to yourself but to others around you, with the CFS/ME I didn’t feel I was ever really believed just how much I was suffering. Thank you!
April 24, 2014 at 8:18 am
I agree with everything said. I’d like to add one thing…”unless you’ve walked a mile in my shoes, you do NOT know how I feel”. I tend to try to find ways to compensate and end up putting the effort where it is not appreciated and not where it would actually help me feel better.
Maybe the next article should be “Snappy Comebacks to Well-Meaning Comments”….
May 2, 2014 at 7:35 am
There’s one on Pinterest – the old-fashioned postcard-type that says:
“I don’t look sick?
Well you don’t look stupid, looks can be deceiving.”
I think it’s my favourite, although I’d never be mean enough to actually say it!
(In all seriousness, I do think most people say things with the best intentions – from what they understand – but sometimes…..)
I had ‘CFS’ for 4 and a half years before a Lyme disease diagnosis. I like this post, although personally I think the shower one should either be rest IN the shower, or on the bathroom floor immediately afterwards!
April 24, 2014 at 9:56 pm
So well said! I have to add one thing to the last one though…ERs need to be more sensitive to people with chronic conditions. My dad finally gave up his battle of over a decade with chronic pain in his lower extremities three years ago. Right before he died, he went to the ER because he was in the worst pain of his life. The ER nurses were treating him like he was a drug addict just coming in for more meds. I am well aware that my dad was on more meds than most people ever take in their lifetime, but he needed them to try to manage the pain since no doctor could offer him a solution that actually worked. Luckily my mom (also an RN) was able to set them straight, but I still want to throttle those nurses who just assumed that he was a drug addict when I guarantee you that my mom came in with all his medical records, and they could have solved the problem with a single phone call to his neurologist instead of treating my dad like trash.
April 25, 2014 at 12:20 am
thanks a lot for that!!!
April 25, 2014 at 5:19 pm
I’d like to wear this on my shirt every day. I’m so sick of being asked, “Are you getting out?” And it’s rarely said with sympathy — there’s usually a tone of voice that says, “What the hell are you doing all day? Why aren’t you better by now?”
April 26, 2014 at 9:31 pm
I can so relate to this. I have to take a medication every day that makes me go through extreme mood swings as a side effect. One minute I am happy and the next I am ready to blow my top. However in my individual case I found that vitamins B6 and B12 help dramatically. However, it is enough to remember to take my meds every day. So I just make an energy drink like Monster part of my morning regimen as they are all loaded with B vitamins. At least once a week someone tells me how energy drinks can be so bad for me. And I tell them how bad it could be for them if I didn’t get my B vitamins.
April 27, 2014 at 12:25 pm
Bryan, as with anything, when overused, anything is bad for you. I know someone who does the 5 hour energy drink every 4 hours. That is NOT good. Another friend does 1 a day, late afternoon when her energy starts to fade….this is how it is supposed to be used.
Also, what works for one may not work for another. We are all individuals and if we are lucky enough to find something that works for so – AWESOME!
April 28, 2014 at 6:50 pm
People close to me have accused me of using my illness to cancel plans or get out of doing something. It stinks!
Marcy westerling says:
April 28, 2014 at 11:16 pm
As someone w.terminal cancer, I can so relate. What is DIFFERENT is because people are so scared of cancer they do some things the opposite. Like refusing to believe you can manage anything or else deciding I must be cured. No, I am dying just not today.
April 29, 2014 at 7:22 pm
Maybe we could come up with some super secret moon crystals to keep people from saying insensitive stuff like this.
Tanya marlow says:
April 30, 2014 at 8:13 am
Superb post – this is spot on. I was nodding to every single one of those. I have ME (and am currently being investigated for POTS, funnily enough) and all of these are said to me on a frustratingly regular basis. I blog about ME at http://tanyamarlow.com where I also talk about the emotional and spiritual impact of illness from a Christian perspective, but I don’t think I have ever read or written a post as comprehensive about the ‘things not to say’ as this one. Great post.
Tony Rothwell says:
April 30, 2014 at 4:00 pm
With me it was “Pull yourself together” or ” “You drink too much” and I would think “It’s my fault.” Always think that don’t we?
Better now. Didn’t pull myself together. Still drinking and it was NOT MY FAULT.
May 1, 2014 at 1:30 am
I think a better approach to this would be 15 things you should/can say to a person with a chronic or invisible illness. I don’t think most people mean any harm, they just either don’t understand or they don’t know what to say. I have an invisible illness and when I hear things that might (but don’t) hurt my feelings, I think it is because they are naïve and I don’t wish my illness on anyone. If it comes up I usually put out so feelers to how receptive they are for information. If I can see it is futile, I smile and go on my way.
May 14, 2014 at 1:13 pm
Fortunately your suggestion was posted! http://pinsandprocrastination.com/10-things-you-should-say-to-someone-with-a-chronic-illness/
Rachel Hamilton says:
May 3, 2014 at 7:26 pm
Im pretty sure you were in my head writing this. Especially because I suffer from POTS, fibro, migraines, and RA and it seems everyone else knows my body better than i do. Its so so nice to find someone who totally gets it.
Rachel Hamilton says:
May 3, 2014 at 7:32 pm
Oh ya P.S. I’m so tired of being called an addict and being judged for the meds I need to take. Show me someone who has been cured from what I have and I will do what they did, until that, zip it folks. Appreciate what you’ve been given (or not given).
May 4, 2014 at 8:35 pm
This is so incredibly insightful and spot on! After 23 years of suffering from several problems as a result of a low-voltage electrocution (accident in a flooded basement), it hurts the most when one or more of these comments come from the family members and/or friends I consider to be closest to me. Eventually, even those “well-meaning” comments become hurtful.
May 5, 2014 at 3:15 pm
May 6, 2014 at 10:28 pm
As someone with a list of chronic illnesses this article rang very true, I wish I could just hand it out to people whenever they say something on this list. I’m sad I had to leave LFC before I got a chance to know you, it would have been nice to have someone to relate to. Aoe
May 9, 2014 at 10:52 am
I appreciate anyone who Is TRYING to help me. At one point I didn’t understand. So how can I expect someone else to understand if it’s not their time to “get it” .
Articles like this, I feel, make “healthy” people afraid to speak to people like us. What else is there to say for someone who doesn’t get It ? Wish there were more of what TO say. The made me a little sad.
May 14, 2014 at 2:16 pm
I, too, appreciate when someone is “trying”. But not all of those attempts at “trying” to be helpful are thoughtful when what they suggest is so basic and such a common-sense approach that I would be a moron if I hadn’t already considered it. As I mentioned in my comment (which is 4 before yours), attempts at “trying to be helpful” from people close to me who SHOULD know, at the very least, what I’ve been going through are the most inconsiderate of all. Things are tough enough. I don’t need to have someone make me feel bad, stupid or offended. Those closest to us should know that what we need is SUPPORT, in any way possible. Yes, a first-time comment meant in a well-meaning way can be dismissed w/out another thought, most of the time. But there are many other “suggestions” that cannot simply be considered as thoughtful. And we shouldn’t be scolded for not doing so.
Dave Thoman says:
May 20, 2014 at 6:48 pm
I agree, i had to read it a couple times and realized it said what NOT to say. So easy to complain and point out others shortcomings instead of giving useful advice like what TO say to someone with a chronic illness. GOOD POINT
Maura Alia Badji says:
May 10, 2014 at 6:38 am
Comments like Jaime’s above make me sad. What else is there to say about someone who doesn’t get it?
I believe this piece’s author summed it up nicely by closing with the most useful thing for people to say to someone with a chronic illness is: I believe you. Because all the other unhelpful, hurtful responses are just roundabout ways of saying: I do not believe you and at some level I think you are faking it.
Rebecca | LettersFromSunnybrook says:
May 14, 2014 at 11:13 am
Oh yes, I get all of these comments regularly. I have Systemic Lupus, Excessive Daytime Somnolence and Food Allergies. I am ALWAYS tired. I HAVE to take horrible meds, and when I try to cut back I wind up in the ER. If I go out in the sun or do anything/take anything to ‘enhance my immune system’ I get worse. Just because a food is ‘natural’ or ‘organic’ doesn’t make it safe for me, since I am allergic to very basic foods.
What a great post and I loved your update on “What to say to someone” as well. Brilliant!
May 17, 2014 at 2:50 pm
“You won’t get any help from medical professionals. All you need to do is get in touch with your anger.” That did it!
May 18, 2014 at 10:55 am
I almost cried reading this. Yes to all of them! The “you are too young to be sick” always gets me, always makes me feel embarrassed and ashamed. I know it’s usually meant as a lament that I am young AND sick, but it just feels crappy. Oh and #11 and #12. Everyone sends me links to what I could be doing, or not doing and I just want to scream!
Thanks for this!
Janet Pauli says:
May 18, 2014 at 5:42 pm
Thank you for this article. You should include MS in those invisible illnesses. My dad and I used to chuckle when people would say “but you look so good”! Thanks, folks.
May 18, 2014 at 7:41 pm
IMO, Janet, all illnesses/injuries/conditions that are “invisible”, at least some of the time, are covered by this wonderful article.
May 20, 2014 at 7:19 pm
Hmm. I don’t think this is quite true. Seemed to me that mental illnesses, which are often both chronic and invisible, are *not* “covered by this wonderful article,” as evidenced by item #13 on the list, which sets physical illness in stark contrast to mental illness. This promotes the ongoing stigmatization of mental illnesses by suggesting that they are not as valid as physical illnesses.
May 20, 2014 at 7:31 pm
I haven’t been replying to most of the comments on here because I’m enjoying seeing the discussions people are having but I wanted to address your comment directly. I did not mean to stigmatize mental illness, I just meant to point out that doctors and people have a way of writing off physical symptoms they don’t understand or can’t easily diagnose as mental or “in patient’s heads”. That is not to say that mental illnesses are not valid and people do not get equally as many of this things said to them on this list. Number 13 is specific to physical illnesses, but that does not mean mental illnesses are not valid, real, or cannot affect your life in real ways. I wrote this article from my perspective as someone with a physical illness based on my experiences and those of my friends with the same illness as me. Every other comment on the list can apply to someone with mental illnesses. I’m sorry if you felt that comment stigmatized mental illnesses but that was not my intention whatsoever. I was just stating something that has been said to me as a way of writing off physical symptoms that other people don’t understand. Just because I say that stress, anxiety, and depression do not cause POTS or other chronic illnesses doesn’t mean that those illnesses do not exist or should not be taken equally as seriously.
May 20, 2014 at 8:39 pm
Melanie, I would like to address your comment, too. Let me start by stating that I was responding to someone who suffers with MS, something my mother experiences, as well. And I must admit that I ddidn’t take #13 as literal as you. But I stand by what I wrote. “IMO” =In My Opinion, and, IMO (and since I wasn’t being literal), I thought the article applied to mental health issues. I know the author has addressed what she wrote and her intentions. I hope now you understand that when I wrote that “all (invisible) illnesses/injuries/conditions are covered” in this article, I meant mental health AND MS. Sorry if I offended you, or others, in any way.
May 19, 2014 at 3:46 am
For me – someone told me – that I have just got used to not working!
May 19, 2014 at 9:48 am
I’ve got ulcerative colitis and I’ve had to deal with some of this, though my BS tolerance level is low and I happily give people both barrels when they say dumb things — when I was really ill, it was actually something to live for since that kind of ignorance seems to find ideal growing conditions on the internet.
Chronic illness is one of those things that people who have never dealt with it can’t understand, similar to war or other traumatic experiences. You can try to explain it, but the uninitiated lack the equipment to process the information properly. It’s not their fault and a lot of people are cool about it. But we’re not talking about them, we’re talking about the stupid people. All they have to know is this — when they do get seriously ill, they’ll repent every stupid thing they said to another person about it.
May 19, 2014 at 3:20 pm
I got diagnosed with ulcerative collitis last summer, and I’ve been slowly learning how to re-adjust my lifestyle and get back on track. I used to always be active, working out, walking in nature, going out with friends, dancing, doing my art, etc. Since I got sick I was to weak to do much of anything. It’s a learning process, but it does take time.
Very few people understand the difficulties you face when you have certain illnesses. My mother and I take care of my aunt who was diagnosed with MS when she was 17. She’s in her 30′s now and she can barely see, barely lift herself off her wheelchair, and overall has no muscle tone in her body what-so-ever. My mother also has her own problems with her joints and spine, so when we need to help each other out we do it as much as we can because none of us are completely healthy and we all need help sometimes.
So, when I hear people saying the things listed to me, or anyone else for that matter, it really rubs me the wrong way and I get irritated really fast. I’m a general friendly person, but don’t be so narrow minded and arrogant..I’ll gladly tell you what I think of your statement. People need to learn to think before they speak. Don’t try to help in a condescending way, and don’t try to understand if you haven’t been put in the same or similar situation.
May 19, 2014 at 3:54 pm
YES!!! Thank you soooo much for this! I would add to this list, though.
16: Don’t tell me I’m just lazy. I would love to be an active member of society, unfortunately, most of the time I can’t. I have pain like you can’t believe, and if I;m out and about all day, don’t bother me for the next 2-3 days, I will be sleeping like nobody’s business to gain back the energy that was used up doing whatever I did the day before.
17: (My bff is guilty of this one) Don’t compare me to someone who has the same disease as me. Fine, they can push through, good for them. But don’t tell me “well so and so has the same thing, probably worse than you, but they can manage to hold down a job.” because you DON’T know anything. They may have more pain tolerance then me. They may be on the right medications that allows them to have the energy to do whatever the hell they do. They may not have another underlying disorder that makes them very anemic, thus making the tired element of their disease much much worse.
18: When I make noises getting up and down, don’t tell me “you’re way too young to be making those sounds.” Yes I’m young. I’m 28, but what you don’t understand is that I basically have the pains and aches of a 50 year old person.
I am dead tired of trying to explain myself to you and others!
Sharon Fillner says:
May 19, 2014 at 9:37 pm
I absolutely love this article and as soon as i finish this comment I will share on my FB page. I was always a very healthy athletic and limber person even after I gained a large amount of weight after marriage and having 5 babies in 11 years. Suddenly at the age of 43, my body just said no more. I spent years going to Drs. being tested for MS, Lupus etc, I was diagnosed with peripheral neuropathy and fibromyalgia(My brother who is a Dr still believes that fibro is a blow off diagnosis), feel wonderful to know your own family doesn’t think you have something a Dr diagnosed you with. Everybody including Dr’s said if I lost weight I would feel better, well guess what I had lap band surgery and lost 120 Lbs, that’s when I realized that my symptoms did not stem from my weight and I was not crazy!! I had to have both of my hips replaced at the age of 50. I have bad arthritis in just about every joint, degenerative discs in my lower spine and my neck that are pressing on nerves, thus the pain and numbness. I also have something wrong with my kidney, and they are currently running tests to see if I have congestive heart failure. I have the luck to have great aging genes and look younger than 57, although I feel 87 most days. I am tired of the dirty looks when I park in handicapped spots even though I have a placard, or ride in the electric carts at stores. Going to the grocery store can make me bedridden for days afterward, I no longer shop for fun, or really enjoy much of anything. I push myself to do things with my children and grandchildren but I pay a high price for doing so. I have an extremely high pain tolerance and sometimes I can hardly stand the pain. I am not a whiner, so people rarely know when I am in pain except my family because I don’t talk much when i hurt, and I am a talker!! I do not handle pain medicine, most make me sick, so believe me I have tried every alternative. This article just resonated with me. Besides my immediate family and one very good friend, I don’t let people see me on bad days, so I have heard almost every one of these comments. I also don’t think most people mean to hurt your feelings although I have heard some snarky comments, I just think they don’t know what to say. Just talk to me like you would any “normal” person!! Thanks so much for this article!!
May 19, 2014 at 9:56 pm
Thank you so much for putting into words what I couldn’t express for myself. I’m glad I’m not the only one who has to deal with these situations, and the absurd amount of guilt you get when someone suggests something that you desperately wish you could do.
Vickie Parmenter Higgins says:
May 20, 2014 at 2:16 am
Wow! You have summed up just about every thing I have heard over the last 25 yrs about my FM (fibromyalgia). Thank you for creating this. I will post this on Facebook and Printerest.
I realize that most people just want to help and I usually just say “I will have to check that out” and thank them. But then you have those few who insist they know what can cure it or causes it. I actually had one person tell me that I liked being sick!!! Just because I would try her cure all silver and other product that she sold . . . that really hurt!!!
Then you have the non-believers that figure you are just lazy, want to get a day off work or don’t want to have any fun. I have heard it all and it took me a while to figure out that I know what is best for me … not them. I know how and what to do to keep my fibro flare ups under some control, but I still have good days and bad days. Sometimes I even think … WOW! I feel great today!!! I must have gotten better. But as you know that happiness and relief is usually short lived. POW . . . It’s back again and worse than last time. I usually can figure out what I did that I shouldn’t have done. As you know sometimes life gets in the way and you just have to pay the price or use all your spoons . . . and then some.
Victoria Kaloss says:
May 20, 2014 at 6:15 am
So true, these have been said to me and I admit, by me at times.
And those simple three words
‘I believe you’ –
melt in my heart sweet ice cream cone drips in August.
May 20, 2014 at 6:48 am
Best article I’ve seen on hidden disabilities (aka chronic medical conditions.) I put a link to this article on my facebook page. It’s something I very strongly feel everyone should read. And reread. No one really knows how it is unless they are also dealing with the same kind of stuff. My friends are bemused but understanding about my phone going off at the most inopportune times to remind me to take a medication that must be taken on a strict schedule for it to work properly. Those not in the know are baffled that I will leave an interesting conversation or other activity to take a pill (and that I always carry water with me.) It can be difficult to explain to someone that you hurt all over and are so tired you could fall asleep standing up when you are at that point. My suggestion: make copies of this article and if you don’t want to have to deal with someone who hasn’t a clue, give them a copy of this article and say “Read this.”
May 20, 2014 at 9:13 am
I’d just like to say thank you for this. I may be (mostly) physically healthy but I do suffer from mental illness and get many of these same comments. “Oh everyone has bad days, everyone gets sad!” You don’t understand. I’m sad all the time. My “good days” are usually comparable to a normal persons bad day. And even worse is the blatant denial of someone’s illness. NEVER tell someone “I don’t believe you” or do something like roll your eyes or give them a big heavy sigh or just raise your eyebrows at someone when they’re trying to tell you how they feel or what’s going on in their mind, or body.
So, thanks again for this! Hopefully people take something from it.
May 20, 2014 at 2:07 pm
I have bipolar illness and the mental disorders are treated the same way. If I hear “Its mind over matter” I think I’d scream. If it was that easy I wouldn’t be sick. I have a very strong will and determination. When I get depressed, I hate myself for my weakness. I am grateful that with medication, I am functional, but I will be on medication for the rest of my life because I know what the alternative would do to me.
Dave Thoman says:
May 20, 2014 at 6:41 pm
Sometimes the best thing to say is nothing at all. I have Liver cancer and am not a candidate for surgery or transplant, but i’m OK with it. I’m also sober for 18 years and have heard it all pertaining to my alcoholism. It’s awkward for people i’m sure,and most mean well.
May 20, 2014 at 11:43 pm
I have Pudendal Neuralgia and just found out that I’m pregnant. Now everyone thinks they have the right to tell me what to do, what I should feel and what meds/foods I can have. They also feel like I should be doing exercises that I can’t do- walking with resistance and “prenatal yoga.” I know everyone means well, but my condition did not and will not just disappear for the next 7-8 months. If I was missing a limb would they tell me that it would grow back? Pregnancy hormones are wonderful for some conditions, but my problem is physical and hormones aren’t going to change it. Very frustrating at a time when I am supposed to be completely happy and blissful.
May 22, 2014 at 12:45 am
I have a number of chronic health issues. Type ii diabetes, allergies to pollen complicated by asthma…or the other way around, inflammatory arthritis, fibromyalgia, and the most recent discovery was an improved nerve between c5 & c6 which requires epidural infections into the spine between those vertebra. If I use the weedeater or attempt to mow the lawn, sleep on my left side, carry a backpack or purse on either shoulder, play guitar, carry much of anything in my left hand, or do anything to try to strengthen the muscles that the impinged nerve runs through, I’ll be in “I’d rather be dead” levels of pain. The hardest thing for me to learn and accept is that there are things I really cannot do anymore if I want to stay pain free. I forget sometimes because I feel better for a while…then I do something like weedeat the back yard for like ten minutes. What I look like to the world is an obese woman who appears to be lazy. I.am so grateful every day for the friends I have who have seen me struggle, the boss who never had a doubt that I was telling him the truth and let me work from home for several months while in treatment/physical therapy, and family who loves me and… I’m blessed to have all of them in my life. Its the strangers who accuse me of not needing my handicapped plackard just because I don’t need my cane today… I used to get angry but now I just realize that they are so afraid of becoming disabled themselves that this is how they deal with that fear. Or maybe they are just asses, who knows. A quote from atshirt I saw recently read “No one can make you feel inferior without your consent.” Taking that power back feels amazing, though it’s very hard, especially if you are not surrounded by people who do believe you.
May 22, 2014 at 10:54 am
Thanks for your post!
As a sufferer of migraines, it’s really upsetting when I have to cut out of evening social engagements early. If my sleep schedule is thrown off, then I’ll guaranteed have a migraine the next day. It is hard for friends to understand this, and it is horrible when they don’t sympathize, or think that you’re using your illness as a crutch.
May 23, 2014 at 8:06 am
I don’t mind #11 when it opens up an interesting conversation, but #12 is the one that kills me, because it usually sounds really blame-y. It’s not my fault I’m sick! But I try to remember that for a lot of people these conversations are mostly about convincing themselves that something like this could never happen to them.
sol eidan says:
May 24, 2014 at 4:34 pm
I have never heard of POTS in my life but the symptoms match mine to a T. I was diagnosed at 20 (four years ago) with a vague vasovagal response to standing – a nerve controlled my fainted, basically/apparently??? My cardiologist gave this to me after I fainted 45 seconds into a table tilt test. I work on a regular basis but take disabled seating during my commute and such. I think… I may have to look into POTS more, I might have a mild to moderate case??? Thank you for the informational links, I feel sort of stunned. And agree with this list 100%.
Jana Williams says:
May 24, 2014 at 4:54 pm
I have been told all of these things at some point in my struggle with Fibromyalgia! It sucks when people tell you that you don’t look sick or tell you to just eat right and exercise! That is easier said than done. It hurts to even wash my hair and I don’t even feel like getting on my clothes or running errands anymore! People act like I choose not to work or have a normal life; like I am being a snob for not doing things with my friends the way I used to. They don’t understand that she is gone and I feel like if I can’t be there like I used to than I am incompetent or a bad friend! I can’t stand for very long but I can’t sit for very long either. Then I just sound like I am always griping or that my problems are bigger than theirs.I am 33 and I feel 90 and I am told I am way too young to have this many problems! I can’t make big plans because I never know how I am going to fill; I just try to get things done when I can manage it! I don’t need my face rubbed in it, I already feel like a bad person as it is! All I have to say is you realize who your real friends are when things get bad, and thank God for my parents! I have had to move back in with them and I am not married nor do I have kids. I have to worry about whether or not that will even be an option! If you can’t be a good friend and you are not part of the solution, than you are part of the problem! Thanks for writing this, I sent it to everyone I know! It helps them to understand how we feel somewhat!
May 28, 2014 at 5:34 pm
Another thing that could be mentioned is the perception of laziness. I was accused of that today by a family member that I have never even met. And her source was my own brother
I have dealt with disbelief from my family for years.. it is heartbreaking TBH.
Before my illness I was the breadwinner for my immediate family.. I often worked multiple jobs. I have worked full time and gone to school full time at the same time. As well as been a wife and mother and volunteer at a variety of causes. It frustrates me no end that it is all I can do most days now is get out of bed.
I would happily trade my illness to be able to work full time again.. and also be able to enjoy the hobbies I gave up, like restoring houses and vehicles and riding horses and motorcycles, etc..
So it is very hard already feeling pretty useless, just to have people call you lazy and a freeloader.
June 6, 2014 at 11:04 am
This is an excellent list. The two that cripple me though are ‘at least you don’t have cancer’ (my brother said that to me) and ‘you’ve lost weight’ – because that is the most important thing. You may not have eaten for a week because you were too exhausted to go shopping, but at least you lost some weight.
Meghan Brewster says:
June 10, 2014 at 6:54 pm
Thanks so much for your post. I love number 11. I find that as soon as I have just come to terms with having a chronic illness; once I have started to accept it and move forward, that is the moment when some well meaning friend of a friend swoops in with frustrating hope…. And you want to believe that the whole time it is just because you have been eating too much sour dough! But it’s so much more than that.
Kelly Mollins says:
June 15, 2014 at 1:10 pm
I suffer from Central Pain Syndrome. As a result I have a high pain tolerance. But all that means is that I can be in severe pain and show very little, outwards that is. I can identify with every single item on this list. Someone once told me that I should meditate when I have pain. I politely asked them how does one meditate with a blowtorch at their leg?
June 15, 2014 at 7:14 pm
Kelly- I had someone once tell me that if I wore different shoes my pain would go away. My pain comes from scar tissue wrapped around a nerve. How changing my shoes would stop that, I have no idea. I think people make stupid suggestions because they think to themselves, “well, maybe nobody ever told them this,” even though we know we’ve all heard it before (or maybe not, if it’s totally crazy). My in-laws don’t really know what’s going on with me because I’ve tried to keep it private. But now that I’m pregnant, they all keep bringing up stuff that I “have” to do or not do. And telling them no or knock it off seems impossible, since they all have an interest in my body now. One demanded that I stop all my medication, which is all stuff approved by my OB, because the benefits of me taking it outweigh the risks. Explaining that without my meds I would be screaming and thrashing in pain made no difference; that’s THEIR grandkid/niece/nephew in there, so they can tell me what I can and cannot do. The discussion about the cost/benefit of my treatments is between me and my husband. I wish I could make them understand that.
I like reading everyone’s comments on here, because it reminds me that there are other people out there who deal with this crap too, and keeps me from going nuts.
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