The Mighty Logo

27 Things People With Invisible Illness Want to Post on Facebook, but Don't

The most helpful emails in health
Browse our free newsletters

When your Facebook news feed is filled with beautiful travel photos, exciting life updates and funny pet videos, it can be intimidating to post something honest and personal about your health. For many of those with chronic and invisible illnesses, deciding whether to post can be a constant source of debate: If you appear happy and healthy, people might think you’re “not that sick,” but if you do “look” sick, people might comment with hurtful judgments or accusations. As a result, some may choose not to talk about their day-to-day reality at all.

To better understand the battles those with invisible illness are fighting on a daily basis, we asked our Mighty community to share a status they want to post on Facebook, but don’t. If you have a loved one with chronic illness, they may be quietly struggling with some of the following. Reach out and let them know you support them.

Here’s what the community shared with us:

1. “There is this tiny, selfish part of me that wants to wish each and every one of you understood the total exhaustion that comes with chronic pain. I wish someone could actually feel what I feel and how the pain becomes the secondary worst thing, that worst is never getting any rest from it. But I would never wish that mental and physical anguish on anyone.”

2. “Just because you see me and I look fine doesn’t mean I’m not going through hell every day. I’m struggling in silence because I don’t want to be a burden or seem like I’m complaining too much.”

3. “I would like to post when I’m finally able to take a shower after weeks of being in too much pain to do so. I would like to be able to express that I’m really not OK, like ever. This is too much and I don’t know how to handle this. I need help. I need someone to really understand.”

4. “Why doesn’t anyone want to talk to me or be my friend anymore? My chronic degenerative neurological disease isn’t contagious… nor is my wheelchair.”

5. “If anyone thinks I prefer being home and alone to working, you couldn’t be further from the truth. I’d happily trade a year of my life for another week of my old life.”

6. “Please don’t judge if you don’t see me doing something you think I should be. You don’t know why I’m not running around and playing with my kid or why I’m not helping my husband carry things.”

7. “Just because I’m smiling in my picture I posted doesn’t mean I’m not hurting. I hide the pain every single day.”

8. “I wish my ‘vacation’ y’all think I go on every few months wasn’t in a hospital bed or confined to my bedroom. My smiles are to keep you from asking questions because I know you simply won’t understand when I try to explain that I’m suffering.”

9. “I want to post every time I don’t feel well, so you can see through the facade I put on. But I also don’t want to sound whiny or be discouraging to other people who are newly diagnosed. And I don’t want people to think I’m incapable either. I feel so split apart just by my emotions dealing with others’ perceptions of me. And then there’s the actual physical, emotional, financial, etc. aspects of my chronic illness…”

10. “My pain levels are at ‘I can’t be dealing with anyone else’s s**t today.’”


11. “To my friends and family: I’m secretly envious of your ability to work, have children, live productive lives and of your successes. I feel like I’m stuck on the outside, looking in. Sincerely, me.”

12. “Sometimes I just need you to listen while I vent. I don’t need advice. If it were as simple to ‘fix’ as you’re suggesting, I surely would have done it by now.”

13. “I could really use some help. I’m lonely and even basic tasks are a struggle. I would love some company.”

14. “It’s called an invisible illness for a reason. Just because I don’t have this banner over my head saying, “I have this!” or show symptoms every waking moment doesn’t mean I don’t have it.”

15. “Just because you don’t see me as much as you all used to doesn’t mean I do not exist. It doesn’t mean I don’t care about seeing all of you and laughing and talking like we used to. It just means I hide my chronic pain at home where it’s bearable to me. I choose to keep my pain between me, myself and my doctor. I choose not to burden anyone with something that cannot be understood by mere looks alone. It’s my battle. I did not choose it. It chose me.”

16. “Today was a bad day. I couldn’t get out of bed. Sorry I missed everything, but my health kinda comes first.”

17. “Why is it that people will like, comment on and share a funny video, but when I am trying to share something that spreads awareness about what I am going through (that could actually help other people!), it seems to be ignored?”

18. “I’m not pretending to be sick, I’m pretending to be well. If it seems I am ‘fine’ for most of the day, then I ‘suddenly’ need to lay down… What seemed fine to you was actually a mask I put on so I can be with friends/family to enjoy the time, help out, etc. My mask slipped and I just don’t have any energy to keep it on any longer.”

19. “When I talk about my health issues I’m not trying to ‘one up’ anyone. I’m just trying to talk to someone about it.”

20. “Yes, I’m still tired. Yes, I slept all day yesterday. No, I probably will not be well-rested tomorrow.”

21. “I’m sick. It’s like having the flu 24/7. I hurt. I can’t eat. I ache. I can’t move. Please don’t judge me unless you know how I feel. Unless you’re in my shoes, you have no place to tell me what I should do or how I should feel. Let me fight my battle without your judgment and stress becoming another battle on top of it.”

22. “You say I’m strong and a fighter… Well, the strength is starting to waver. I need more help and support, love and care… I’m tired of constantly having to put on an act to seem normal so you don’t feel awkward or ashamed.”

23. “Warning: flare in progress. Talk to me at your own risk.”

24. “The truth… ‘I feel so sick and sore today.’ I don’t want to post this because I would be saying it almost every day, yet I force myself to put on a brave face and go to work and get as much done as possible. So when people see me from the outside, they wouldn’t be able to tell how much pain I’m in and would think I’m attention-seeking if I posted anything.”

25. “I showered today! Now excuse me while I go recuperate.”

26. “I’m tired of fighting a constant uphill battle. I don’t know how much more of this pain and illness my body can take. I can sense that you’re all tired of hearing about it… Imagine how tired I am living it.”

27. “I am trying as hard as I can.”

Originally published: August 2, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home