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21 Things That Seem Obvious About Chronic Illness, but the General Public Misunderstands

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Since many people have at least heard of chronic illnesses like fibromyalgia, Crohn’s disease, Lyme disease, etc., you’d think there would be some basic truths about chronic illness in general that people would understand. But people who live with chronic illnesses know from the questions and comments they get on a regular basis that the general public actually doesn’t know a lot of seemingly obvious realities of chronic illness (if the number of people who ask you when you’ll “get better” is any indication…).

Last week, graphic designer Louie Mantia posted a question on Twitter: “What’s something that seems obvious within your profession, but the general public seems to misunderstand?” While he focused his question on careers, we thought the question would apply perfectly to chronic illness, too. So we asked our Mighty community to share something about chronic illness that seems obvious, but people always seem to misunderstand. In order for our friends, family and the general public to support this community, they should at least be educated on these “obvious” realities. Let us know in the comments if you have any “truths” to add.

  1. “There is no break. I’m always operating with some high level of pain, usually in more than one spot, and I don’t get enough sleep/rest of top of it, which makes it worse and creates a cycle. And where I live in the south, the weather can be horrible one day and send me into a flare for weeks.” — Jenn W.
  2. “It doesn’t end! I know that sounds pretty obvious, but people honestly think you should be getting better. In a ‘regular life’ they get sick, or hurt, take some time and they get better. They do things to help symptoms, or speed recovery even, and it just happens, they return to ‘normalcy.’ This is ingrained in us from a very early age. I think that even people with chronic illness deal with this, on a very primal level, sometimes without even realizing it. ‘If I just do this/don’t do this I will get better’ echoes around in my brain, over and over, even though I know logically this is not true. But I am not sure how to educate the general public about it, when we the sufferers have not even really grasped it.” — Terri T.
  3. “When someone with chronic illness says that they are tired, it means something very different than when someone without chronic illness says the same thing. There is no guarantee that our energy will be replenished after sleeping.” — Ami C.
  4. I am unable to work because I’m just exhausted all the time. But, I still have two children who I have to run around, prepare meals for, do laundry and try to rest in between. Most people think just because I don’t actually go out to work and stay home, that I do nothing! Staying home and having one or more chronic illnesses is like false advertising! It’s like telling the uninformed general public that staying home due to a chronic illness is a luxury!” — Lisa G.
  5. “I’ve been told ‘You should have a plan, you’re 24,’ but how am I supposed to have plan when I have no idea when or even if I’ll be better enough to go to school full-time or support myself? People don’t always seem to understand how difficult it is to plan ahead when your future and abilities are a big question mark.” — Bailey CK
  6. “When I tell people I have fibromyalgia, they assume it’s just pain I deal with. When I begin to talk about other symptoms they seem shocked that I go through so much with having fibromyalgia.” — Letia N.
  7. “Just because I’m not limping or struggling walking into the store from my [accessible] parking space, doesn’t mean I won’t be on the way out.” — Merri S.
  8. “Being on disability isn’t fun. I don’t get a lot of money like people must think. It’s struggling each month to pay your bills. It’s worrying if they may take your benefits for whatever reason at any time. It’s having to report small changes. It’s a loss of independence and the ability to provide for yourself. It’s a reminder of just how limited you are now. Chronic illness is lonely, isolating and debilitating.” — Marissa R.
  9. “After a diagnosis of chronic illness, you are still the same person, just with a new reality to deal with. We still have dreams and goals, likes and dislikes, personalities and idiosyncrasies. Chronic illness doesn’t suddenly wipe away the person that you are, it just means you have to adapt to a new reality so that you can continue being the person you always were. That often requires accommodation and assistance that looks different than it does for healthy people, but let’s not pretend that healthy people do everything on their own with no assistance or accommodation.” — Laura J.
  10. “Putting on a brave face in public is tiring and sometimes frustrating. But I don’t do it for you, I need to feel ‘normal’ sometimes, even if the consequences are dire.” — Chris K.
  11. “Just because I work a full-time job and can manage going to appointments and therapies pretty well on my own doesn’t mean I’m doing OK. I am putting every ounce of effort into managing my diseases and conditions. I’m still struggling, I just put on a game face so I can provide for myself and make ends meet.” — Amelia H.
  12. “Just because I post happy photos on social media, that doesn’t mean I really feel good. We all have good moments, and who wants to post photos of themselves lying in bed with a miserable frown on their face? Like that would go over well. So you’re damned if you do (post happy photos), and damned if you don’t.” — Stacey A.
  13. “Chronic does not mean incapable. It is insulting and frustrating for people to assume that because we are ill we need help, we cannot do things for ourselves, or we are unable to think or make decisions.” — Gwendolyn A.
  14. “The public needs to believe people with chronic conditions. I see so many ill people suffering deeply because their families and others in their life think it’s not real, just because they can’t see it. They can’t see what our bodies are doing internally. They think I can do anything a healthy person could do. I know they can’t possibly understand something they have never experienced, but I wish more would try to empathize. I don’t want pity, just realization of my limitations.” — Sheila W.
  15. “I already considered and most likely also already tried pretty much all the things they come up with as ‘solutions for the problem.’ Also: that sometimes I just want to be able to tell somebody the truth when they ask me how I feel, without actually asking for absolute pity or a solution!” — Inge V.
  16. “What works for one person won’t necessarily work for another. Just because a certain diet or supplement worked for one person, doesn’t mean it’ll work for another. We can be trusted to determine what is worth trying and what isn’t, and we don’t owe anyone an explanation either way.” — Phoebe B.
  17. “That medication is the magic ‘fix it all’ button. For example (having fibromyalgia), the Lyrica commercials portray that someone who takes the med can suddenly go to amusement parks and do all this physical activity and be fine, when that isn’t the reality of living in constant chronic pain.” — Kaitlyn Y.
  18. “When I say I can’t do something, it really means I can’t do something. I work hard every day to keep myself going, so on off days I really do need to stop, so don’t make me feel guilty for doing so.” — Gina N.
  19. “With chronic conditions that affect immune systems, something they catch which means they’re in bed for a few days can put us in the hospital or worse.” — Sarah C.
  20. “It takes months to see specialists and then months to get a plan and course of treatment going that works. You can’t walk into an office and walk out feeling 100 percent better, it takes months and pushing your body to its limit to ‘get better.’” — Raya D.
  21. “Empathy. Just because you do not share my or others’ experiences regarding chronic illness or pain does not mean you cannot show kindness, compassion and support. This is so much harder for people than I ever realized.” — Amy M.
Originally published: July 10, 2018
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