16 Things People With Fibromyalgia Mean When They Say 'I Can't Hang Out'
Many people value having a social life and good relationships with friends and family but when you live with fibromyalgia, spending time with people is often easier said than done.
You might make plans with a friend and then on the day of, your body stops cooperating with you. You might be really tired or in way too much pain, so you have to cancel your plans. Explaining this to someone else can be difficult though. How can someone else understand what not being able to hang out truly means in your situation?
That’s why we turned to our Mighty community. We wanted to find out what “I can’t hang out” actually means to someone who lives with fibromyalgia.
Here’s what our community told us:
1. There’s too much going on right now.
“Traveling, sitting, standing, walking, temperature and people all affect me greatly right now. I’m overwhelmed with pain, anxiety and fatigue. I’m also dealing with digestive issues that make dealing with bathrooms difficult. I don’t have it in me to get ready and go anywhere. I skipped a massage appointment; it was too much for me. I love you, dearly and ask you to keep trying, asking and understanding. Hopefully, we can get together on a less rotten day for me.” – Krista I.
2. My body needs to rest.
“I politely say I’m just not up for it. They assume it’s my back bothering me. But what I really mean is that my body is screaming for rest because I’m in so much pain.” – Coleen S.
“After work and trying to spend some time each week with my daughter and her family, I simply need to rest my body. Many weekends are spent sleeping just to muster the energy to do it all again next week.” – Tracye D.
3. It takes too much effort to get ready.
“I really wish I could come but the thought of getting showered, dressed, completely ready and then exerting more energy being out makes me want to cry.” – Clara H.
4. Some days are just “no people” kind of days.
“I don’t feel like dealing with people. It’s nothing personal. But when you’re so fatigued you can barely keep your eyes open, and the skin on your arms hurts just with air touching it, it’s a no people type of day.” – Alexandria M.
5. I’m going through a flare.
“‘I can’t hang out’” means a flare decided it wanted to come and ruin my plans. So instead of hanging out with you, which I was really looking forward to, I am now stuck in bed or in my house because the thought of people touching me or accidentally bumping into me and touching my skin is excruciating. The thought of the sun hitting my skin is painful. Or if it’s cold, the thought of the cold air hitting me is extremely painful. So, now I have to take these pain meds that are going to leave me feeling like a zombie just so I can feel some relief. I’m so sorry to ruin our plans yet again.” – Sindy L.
“I wish I could but my fibro is flaring. I have a small world of family and friends. The people who are still in my life, understand… I hope.” – A.L.
6. I don’t want to embarrass myself.
“If I force myself to socialize, I may end up embarrassing myself by not being able to hold a conversation, having to leave suddenly due to pain or mess up due to brain fog. I need to protect myself from that, despite being desperate to see you.” – Kelly W.
7. I’m not OK to travel.
“I can’t physically lift my legs up to drive anywhere. I don’t feel safe driving.” – April C.
8. I don’t want to regret it tomorrow.
“I can’t hang out because today is a high pain day or my anxiety won’t let me. Sometimes I will force myself and will regret it almost immediately or will pay for it the next day. Thankfully I have friends who support me and understand and never judge me for the way that I am.” – Elizabeth T.
“What I really mean is that today is a bad day and I can’t hang out. I’m so exhausted from pain that just the thought of using my energy is draining me. I want to… BUT I can’t! I’d love nothing more than to feel ‘normal’ today and smile, laugh and joke with you, creating a good memory. Instead, my body is dictating what I get to do and I’m upset, but I need some down time just so I can get through tomorrow a little better than today. It sucks having to let you down and I’m sorry.” – Louise P.
9. Can we change what ‘hang out’ means?
“I feel so overwhelmed right now and am not up to coming out. But I would really appreciate someone coming over for tea and a chat to cheer me up!” – Karla P.
10. I’m just too tired.
“I can barely stay awake right now, even responding to this message in the first place took actual effort and now I just want to collapse back on the couch.” – Jenifer B.
“I am so exhausted, it’s hard to relay how bad that feels. I would love to feel better and have fun, but my body has other plans.” – Shannon C.
“That even starring out of the house is just too much to consider and I feel like a phone battery on 2%.” – Virgadean R.
11. I don’t want to pretend.
“I’m in too much pain to go through the trouble of putting on that ‘mask’ and pretending everything is fine. I don’t have the ability to pretend today.” – Heather B.
12. My needs are unique.
“I don’t want to be compared to your mom, friend, etc. who might also have a chronic illness. We are NOT the same person with the same symptoms, medications or mobility just because we share a diagnosis!” – Amalia B.
“I don’t want to hear platitudes like, ‘you’ll feel better if you get out more.’ Nope, getting out means days of recovery afterward and I’m tired of explaining it.” – Claudia M.
13. I won’t be able to chat like normal.
“I am currently in a fog and the idea of trying to keep up with what is going on is more than I can handle today.” – JoAnna Talik
14. I’m not myself right now.
“I can’t hold myself up. I can barely string a sentence together and the pain is so unpredictable I don’t feel safe outside of my bed. You’re worth my whole, present self, not a shell of the person I am.” – Hannah W.
“I can’t handle one more thought process, let alone getting dressed, driving there, driving home and adjusting my plans for the next day to allow for my recovery time. It’s literally not you or me. It’s my body that can’t come out and play.” – Donita W.
“My body hurts too bad to walk, function, and barely exist… let alone go out and put on a smile for hours. I’d rather be with you, but my body has other ideas!” – Ally M.
15. Thank you for understanding.
“I’ve pushed as far as I can. I’m sorry you’re the one I have to ‘bail’ on. Rain check? (And by the way, thank you for sticking around.)” – Lillian D.
“Thank you for understanding my condition and I hope to see you next time.” – Crystal M.
16. Please ask me again.
“It’s not that I don’t want to, it’s that I physically am in a position where I know my limits, and this is past my limit. I’m sorry, but please still ask me next time.” – Amanda G.
“My fibro is running riot between pain, brain fog and lack of sleep. Can we rearrange? (Thanks for understanding. It means a lot.)” – Lauren A.
If you can relate to the meanings on this list, please know you are not alone and reach out to trusted loved one if you need to talk. You can also check in with The Mighty’s fibromyalgia community by posting a thought or question with the hashtags #checkinwithme and #fibromyalgia.
Below are some helpful articles from our fibromyalgia community:
- 15 Things People With Chronic Illness Mean When They Say ‘I Don’t Feel Good’
- Dear Friends, From Your Friend With Fibro
- 14 ‘Normal’ Things That Are Difficult When You Live With Fibromyalgia
- 13 Tips for Navigating Romantic Relationships When You Have Fibromyalgia
- What My Friends Should Know About My Life With Fibromyalgia