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30 'Socially Awkward' Things People Do Because They Live With Chronic Illness

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Living with chronic illness sometimes means you have to make adjustments in your daily habits and routine to make things easier on yourself. While these habits aren’t necessarily “bad” and shouldn’t have to cause others to give you strange looks or questions, sometimes they might make you feel awkward since others don’t understand the story behind it. And you may not always feel like explaining how your illness relates to your behavior, especially with casual acquaintances and in certain social situations.

So we asked our Mighty chronic illness community to share the things they do because of their illness others might think are “socially awkward,” to hopefully help increase understanding and compassion about the ways illness can affect you. No one should be made to feel ashamed or judged because of how they deal with their health challenges. You deserve support and kindness.

  1. “If I talk about my illness others think I’m complaining, being negative or making excuses. I’m really just looking for understanding and support.” — Becky D.
  2. “There are very few people I like in my house. Other than them I don’t like people over. I also rarely answer my door if I’m not expecting someone. If I do, even if it’s a good friend, I talk to them outside and don’t let them in. My home is my safe space and I find entertaining guests is one of the most energy exerting situations. These days I have precious little energy and none to unexpectedly spare. People always just assume I’m being weird and rude.” — Sarah L.
  3. “Being on my phone. I always have it with me in case I need it, and I use it as distraction if my pain starts to get too high. I know how rude it is to be scrolling or playing when you have company, I would just rather play than moan and groan!” — Melissa M.
  4. “I stop and lean on things randomly like benches and tables and bend over or stretch to try and release nerves that suddenly pinch in my back. I fidget a lot.” — Courtney D.
  5. I often look unhappy or grumpy, giving the impression I am in a bad mood even when I am able to ignore the pain and fatigue enough to enjoy myself. Sometimes I try to force a smile but it looks awkward.” — Sarah N.
  6. “Making notes on anything I may need to remember later. Always have pad and pen with me as writing down instead of typing on an iPad makes me remember easier.” — Michelle M.
  7. “Some days I just don’t get dressed. My skin hurts so bad anything other than my PJs hurt. I can not take the seams rubbing my legs or the bra pressing on my shoulders. I can not even take the seam in socks on my toes some days. Other days I would give anything to have a full on body of armor to keep everything from putting pressure on me. So people can not understand how one condition causes one thing and the next day another can cause an opposite or different effect.” — Michelle H.
  8. “Because of my severe Crohn’s disease, I have to stop for bathroom breaks quite often. Bathroom trips are not quick, and I have to have my wet wipes on hand every time. People without GI issues often are uncomfortable with the amount of time I spend in the bathroom, especially in public. It’s something I learned to not be self-conscious about a long time ago, but it never fails to create some awkward tension when spending time with new people.” — Kristi L.
  9. “I’m usually stuck inside at outdoor gatherings and parties, not because I don’t want to be social but because my system doesn’t tolerate heat or cold well. Because of this I carry an insulated bag with cold packs in the summer.” — Terri L.
  10. “I struggle with stairs because of knee and ankle pain/swelling from rheumatoid arthritis. I was at a movie theater a little while ago and had popcorn in one hand and something else in the other so I couldn’t use the handrail up the stairs. I was shocked at how hard it was to get up the stairs! I bet I looked like I was just out of shape or irritating if someone was behind me. I won’t do that again!” — Chris R.
  11. “I never eat from a potluck or other gathering due to celiac disease and other food allergies. This makes me appear as though I’m a food critic, when I don’t want to explain my medical history for the thousandth time over a pot of meatballs. ” — Amanda S.
  12. ” I always have to reply ‘maybe’ to parties. I don’t like going to them in general but I need to socialize and some people there, are my only chance to see them more than once a year. The most awkward part is the conversations: ‘So what’ve you been up to?’ ‘Trying to not die, but not really living either I guess.’ ‘Umm, taken up any new hobbies?’ ‘If you count getting 20 to 30 needles injected into my body every other week now, then yeah, sure.’ I think I should just sit in the corner, drinking water out of an empty beer bottle so no one ‘peer pressures me.’ Which, we’re nearly 30… why is that still a thing?” — Julia O.
  13. “Sitting down at events or not dancing. At a wedding and at a Christmas party recently I had people telling me to come dance several times. I have EDS, no way was I going to even try to dance and almost certainly hurt myself, I hurt enough the next day without dancing. My rule is generally one or two slow dances with my husband.” — Sheryl F.
  14. I chew with my mouth open and slur my words. I often don’t reply unless I have to, and I don’t sing the worship songs at church. That’s because I have trigeminal neuralgia, which makes taking, singing and eating extremely painful. I have had to adjust the way I speak and eat to try and get by with the least amount of flare-ups as I can.” — Bethany R.
  15. “I always end up putting my feet up on seats/chairs (low blood pressure/orthostatic intolerance/postural orthostatic tachycardia syndrome [POTS] issues).” — Rach C.
  16. “When I was still working, sitting had become a huge problem. As a social worker, I had lots of meetings with all sorts of different people all the time. It got so that I just had to get up mid-meeting and stand against a wall. Some of the people I was with often came to understand and it didn’t phase them, but we’d often have families in a meeting that weren’t familiar with me and I’m sure wondered what my problem was. Have to say though, a few times even someone who didn’t know me at all would ask, ‘Bad back?’” — Sue L.
  17. “Gripping my groin/abdomen and crying out in pain as I double over and often have to sit on the ground while simultaneously shooing away concerned bystanders by assuring them that ‘I’m fine, this is normal! No really, I promise!’” — Genesis C.
  18. “Friends have actually told me that I am rude when they see me in like a grocery store and it’s more just [that I] can only handle one thing at a time so I think I’m short with them and I don’t even realize I’m doing it.” — Samantha S.
  19. “I pick at small amounts of food or avoid eating at social functions. I have gastroparesis and it’s often difficult for me to eat.” — Sarah D.
  20. “I can lose my words mid-sentence and my thoughts come out garbled. I often cough a lot during conversations, because my stomach is churning so badly causing indigestion which makes me cough. I have to stare intensely and really focus on someone if they are saying something important otherwise I’ll miss part of the conversation and not know what’s going on, sometimes I go so far as taking notes.” — Tammy J.
  21. “Walk around parking lots endlessly, sometimes in the freezing cold and often with a grocery cart, trying to find my car. I’m often embarrassed when I have to turn around and start walking int the opposite direction, because then it becomes obvious I have no idea where I parked. Neuro Lyme has left me with terrible memory issues on top of a non-existent sense of direction!” — Kerry L.
  22. “Not standing up if people walk over to talk to me. If I’m sitting down and someone comes over to talk to me I won’t stand up and face them, it often comes across as rude or awkward that I don’t want to stand on their same level. Sometimes pain just makes it too hard.” — Nae W.
  23. “I have to avoid all UV and flourescent lighting so wearing sunglasses and protective clothing indoors or heavy clothing in the summer always attracts dirty stares.” — Arica S.
  24. “I pick at my nose sometimes. My meds cause dryness of the nostrils. I pick because sometimes it gets clogged up and I can’t breathe normally. Even using nasal spray every few hours feels weird when I am at work.” – Sharizan S.
  25. “I always seem to be fidgeting, always popping and clicking my joints. People think I’m disinterested but really it feels like they need to be popped. I have Ehlers-Danlos syndrome.” — Tara M.
  26. “[I] don’t bathe or shower every day. Too draining. I wash my hair at most twice a week because I have to spend an hour to recover.” — Anjuli H.
  27. “When I first meet people. I keep to myself and beat around the bush to some questions because I don’t want them to be scared and run away because of my medical issues.” — Sarah B.
  28. “I put my legs in weird positions because staying in one position too long hurts and I often sit cross-legged on furniture and I take over more than my share of the couch… They think I’m being rude or weird but I just kind of have to do it.” — Kay R.
  29. “Being the teenager on the bus using the disabled seat, and not standing up when there’s a slightly older person on the bus.” — Tessa R.
  30. “Extremely long awkward pauses followed by a lot of stuttering when people ask what I major in/do for a living (because I don’t go to school or work).” — Beccah L.
Originally published: March 14, 2018
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