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What It's Really Like Being in Between 'Sick' and 'Healthy'

There’s a misconception among people without health challenges that illness is fairly black and white. You’re either sick, or you’re not. You’re going to get better soon, or you have a terminal illness. But in our chronic illness community, we know there’s a gray area. There’s a space between “sick” and “well,” in which you’re constantly dealing with symptoms, flares and medications, but you still look pretty healthy on the outside and can work a few hours, see friends occasionally and sometimes do fun things healthy people can do.

But underneath that healthy-seeming exterior are challenges, both physical and emotional, that no one sees. You’re not like all your healthy friends, since you are living with health challenges, but you’re also not like those who deal with more severe disease prognoses and aren’t able to do some of the things you can do. We asked our Mighty community to share a secret of what it’s like being between sick and healthy that no one knows. Let’s correct the misconceptions around being chronically ill while “looking fine.”

Here’s what our community told us:

1. “Because we are well enough to participate in daily tasks, like cooking, or working part-time, we seem normal… but those tasks require as much energy as a normal person would use at the gym or running a race. The area between fully sick and fully healthy that we exist in allows us to appear normal, but internally we are fighting for survival and clawing our way to a normal life.” — Liberty W.

2. “How much it can crush your spirit. After being diagnosed I went through the roughest period of my life. You don’t fit into any one category. You can get a lot of negative reactions from people you know. Especially if you’re recently diagnosed and they might not believe you.” — Hunter H.

3. “Every time I have a good period, I start to get my hopes up that maybe things are turning around and maybe I’m miraculously getting better. Then when the bad days come, it crushes that hope which adds sadness and depression on top of everything else. But no matter how many times it happens, that hope always crops up when there are good days.” — Bonnie P.

4. “The self-imposed guilt, pressure and feeling of failure is suffocating. I can’t live like other people but I don’t know how to live in peace with my limitations.” — Teresa M.

5. “You get taken less seriously as a ‘sick’ person because you aren’t quite ‘sick enough’ but you also aren’t taken seriously as a ‘healthy’ person because you can’t do all the things a healthy person can do. It’s a limbo position, sort of between two worlds. Between one where you are grateful that you aren’t more sick, but also feel sad about the things you can’t do compared to your peers. And feeling all of those things is tiring!” — Becky W.

6. “I never get to quite enjoy being almost healthy because I dread that I’ll be sick again any minute and that is mentally exhausting itself.” — Kelcey S.

7. “Feeling like you can’t relate to anyone. Conversations become difficult because you feel like no one can possibly understand what you’re going through.” — Sally E.

8. “Sometimes if I am in between a flare and being great and ‘healthy’ I need to be very careful what I do. If I do too much, ‘sick’ is on the horizon. So don’t be mad if I cancel plans. I literally have to listen to my body and feeling OK is not being healthy and pushing it can go bad very fast.” — Tamara W.

9. “The amount of guilt I feel on ‘good days’ can get so overwhelming that I avoid doing fun things because I worry about what others will think if I show them I can have fun.” — Tyffanie E.

10. “Just because I’m standing upright and smiling doesn’t mean I’m magically healed. Being chronically ill doesn’t mean I can’t joke through the hell I experience every chance I get. If anything… it’s enhanced my sense of humor.” — Heidi M.

11. “Posting a picture of yourself doing a ‘normal’ activity on social media doesn’t mean you’re all better. What they don’t see is you being laid up in bed for the next week because you wanted to go on a double date for dinner and play dominoes afterwards, once every three or four months.” — Jeanne M.

12. “I am existing from one moment to the next. I tell myself ‘just get through this day’ so often to encourage myself to keep going. Sometimes I am so confused that I am scared.” — Jennifer C.

13. “You are constantly trying to manage your good days to prevent bad days, so you never truly feel like you have the freedom to live life to its fullest. If I overdo it because I’m feeling good, it ultimately impacts me, my significant other, my work, my co-workers and any other plans I’d made.” — Masha P.

14. “If you do feel ‘different’ sick you have to convince the doctor that it’s not a normal part of your chronic illness and something else is wrong. I kept being told it’s just a side effect of your autoimmune disease and I actually had pneumonia, not at all related to my disease!” — Denise O.

15. “Existing does not equate to living. Therefore comments like ‘you should be thankful you even woke up today’ don’t help. If you didn’t wake up inside my body, you shouldn’t make assumptions of what I should or shouldn’t be thankful for!” — Donna C.

16. “I might manage a part-time job but the energy I need to pay the bills means I don’t have energy for going out or cooking or even staying awake! And just because I work part-time, I’m not idle or lucky!” — Jen G.

17. “You never feel ‘great’… you’re always pushing through in pain usually with a smile but lots of tears behind closed doors.” — Jenny W.

18. “The guilt is unimaginable, especially as a wife and mom: I always feel like I should be doing more, but in reality I’m probably doing more than I should.” — Lessa B.

19. “I don’t know my body anymore or how to respond to it. I never know from one minute to the next what it might or might do to knock me down for however long it decides.” — Lisa H.

20. “You feel well enough to try to participate in the real world but [are] too sick to remain there. You look unreliable to people.” — Kristen E.

Getty photo by Lisa5201