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19 Posts People With Chronic Pain Want to Write on Facebook, but Don't

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For someone living with chronic pain, Facebook can seem like a minefield. You could write an honest post about how you’re feeling, but would your friends respond with supportive comments and encouragement? Would they be confused because you “don’t look sick?” Or would they respond at all? Chronic pain isn’t an easy topic to bring up on social media, and it’s understandable that many people choose not to write about it.

Facebook friends need to be educated about what living with chronic pain is really like, and you deserve an outlet to be honest in, so we asked our Mighty community with chronic pain to share a post they want to write on Facebook, but don’t. With more understanding of the struggles their friends go through every day, hopefully people who don’t live with chronic pain can begin to learn how to be truly supportive of those who do.

Here’s what our community told us:

1. “Just because I’m having a good pain day right now doesn’t mean my condition is in my head. My good days don’t discredit the pain I experience 99 percent of the time. Just because I look OK on the outside doesn’t mean I’m not [in pain].”

2. “I’m sorry if you’re sick and tired of seeing my posts about my health. Try to remember I am actually sick and tired every single second of every single day. And because of that fact I have zero social life. So sometimes just typing it on a screen and getting it out there helps. If it bothers you, just scroll past. But if you care… leave me a few words of comfort.”

3. “Just because I am in class with my mobility scooter and am able to walk over to sit at a table, does not mean I am able to stand up and open or close a window or do anything else that requires leaving my seat. I may look like a ‘normal’ person, but I am severely sick and in pain all the time all day long.”

4. “I hurt most of the time. I smile and use most of my energy to be kind to everyone. When you don’t see me I’m more than likely in pain and struggling to get the simplest tasks done.”

5. “When I say I am tired, it’s not simply sleepy… it’s exhausted for no reason other than my inflammation is high. I am not posting it because I want to know what natural thing you have for your normal low energy level… I just needed to say it out loud so it’s not trapped inside my head. Going to take a nap won’t help either, people!”

6. “I’m sorry for being so short with you all and I am also sorry for being so distant. Sometimes it is really hard to be happy for other people going on adventures and trips when I used to be so active. Yes, there is an element of jealousy, but I do overcome that. Don’t let my snippy mouth fool you. The truth is, I wish I could be a better friend, a better family member, and a better member of society… Please share your happy moments with me and I’ll try harder to be more positive.”

7. “I want to reach out so badly, especially on my really bad days, but I know people will perceive it as complaining, seeking pity, or weakness. People have drifted away or turned the other cheek because they don’t know how to help or just can’t understand.”

8. “My illnesses do not define me. They are not me. I know I complain, I moan and I cancel all my plans. Please understand that if I had it any other way I would. I am braver than you think.”

9. “There are lots of things I’ve wanted to share to spread a little understanding, but I don’t in fear of being viewed as someone who’s trying to get attention. I mostly want people I work with or have worked for to see these things so they can understand why I’ve called in sick.”

10. “The person I am inside and the person [my condition] forces me to be every waking and sleeping moment of my life are polar opposites. I constantly walk on egg shells in fear that I’ll overdo it and be in a place where I’m not able to escape from the noise, lights, people, and everything that becomes too overwhelming when my symptoms get bad. Despite this, I will not stop fighting.”

11.I’ve always wanted to talk to people about asking, ‘How are you doing?’ It always breaks my heart when someone asks that and I answer honestly only to see their face drop or their eyes glaze… and I realize they just wanted me to say ‘Great!’ Or ‘I’m fine, thanks.’ Part of me wants to say, ‘Why ask?’ If you can’t handle or don’t care about the answer, asking is not polite or kind.”

12. “It’s hard to live financially when you are too sick to work but not sick enough to get SSDI after years of working. I want to throw my hands up and try to go back to work but I physically can’t.”

13. “Hey, I’m still here, I might not have been around lately, but I still care and I miss you. I feel like you’ve forgotten me. Please, just talk to me.’”

14. “Every day is an absolute struggle just to appear normal, and then working and maintaining a life on top is exhausting. Every day I wake up more exhausted than when I went to bed. It gets slightly better at the end of the day. Then I struggle to sleep because of the pain. It’s like having a permanent hangover.”

15. “Family, friends and colleges. I am sick. I may not look sick. I may not act sick. You will see my laugh and smile and talk with you every day. But please remember that every day is a momentous struggle to be there for you in my life and work… Please think before saying I’m a bad friend or family member. Please think before saying I’m ‘always ill.’ Please think before questioning my days off work. I don’t do this on purpose. I didn’t choose this. But I choose to be happy.”

16. “I would rather talk about other things than my illness, how I am feeling, and what hurts today, what causes my illness to flare…. To get outside of myself for a while. I might be fragile, but I want to feel normal, even if it’s for a few seconds.”

17. “Please… do not tell me how tired you are after you went to the gym. Please don’t tell me how your aunt, sister, grandma’s nephew twice removed has that but is not as tired as I am. You have absolutely no clue.”

18. “I lied to you today. I’m not OK. I’m not OK at all. I’m exhausted. I’m in so much pain, I can’t think. I just need you to see through my lies. I just need to tell you the truth, but I don’t. You ask, and I lie.”

19. “I sometimes resent people who complain about their temporary pain, and then I resent myself for not being as understanding. Chronic pain desensitizes you when it comes to a ‘normal’ person pain. Pain goes away — chronic pain never does. I wake up feeling the way you feel after pulling a muscle or running a few miles, and that is honestly the best I will feel all day.”

What’s a post you want to write on Facebook about your chronic pain, but don’t? Share in the comments below.

Originally published: March 10, 2017
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