15 Things People Don't Realize You're Doing Because Your Illness Is Flaring
Managing day-to-day life with a chronic illness is no easy task. Not only do you have to worry about the symptoms and side effects, as well as doctor appointments, medications, treatments and therapies, but there’s also your everyday life and responsibilities, too. So when your chronic illness decides to flare and you experience a big increase in symptoms, it can be a lot to cope with.
Many of those in our community have developed certain habits, behaviors or techniques they turn to during flare-ups to help them manage the symptoms and just get through. But friends and family may not always recognize why their loved ones are doing these things, which can lead to misunderstandings – and it’s not always easy to communicate in the midst of a flare.
That’s why we asked our Mighty community to share something that people don’t realize they’re doing because their illness is flaring. If you live with a chronic illness and recognize some of your own behaviors below, know you’re not alone, and it’s OK to take care of yourself in whatever way you need to during a flare-up. You’ve got this.
Here’s what our community shared with us:
1. Sleeping a Lot
“Sleeping all the time. My family just thinks I’m depressed when in reality I’m in so much pain I want to scream.” – Elizabeth H.
“Sleep, when I’m having a really big flare I sleep a lot. It helps with the pain, particularly when the painkillers don’t even touch the sides of it.” – Annastasia L.
2. Rocking Back and Forth
“Slightly rock back and forth. Or when I’m sitting, all my weight is on my left side and I look lopsided.” – Melissa S.E.
“The baby rock. When you sway with a baby in your arms. I start rocking when the pain flares.” – Nikki M.
“Rocking back and forth trying to either get my joints to stop hurting so badly or if it’s a gastroparesis flare rocking back and forth trying to make the horrific pain in my tummy go away even if it’s just for a few minutes.” – Joyll C.
3. Speaking Differently Than Usual
“I’ve noticed (and my husband has learned) that I start to mumble and speak slowly/quietly when I am in pain or extremely fatigued because of my lupus. Talking at a normal volume and enunciating my words just takes too much energy.” – Kimberly R.
“I jumble my words and I talk fast.” – Christina G.
“I get words mistakenly combined and confused. I think it’s the divided attention.” – AnnMarie M.
4. Concentrating on Your Breath
“Concentrating on slow deep breaths to help ease the pain and symptoms. Sometimes I can’t focus on anything but my breathing.” – Tiffany T.
“Clenching my jaw and holding my breath.” – Ceil B.
“Holding my breath and sighing! It drives people crazy but I don’t realize I’m doing it!” – Jess M.
5. Avoiding People
“I go ‘off the grid’ because when I’m flaring I’m in more pain than usual and I just have no patience with people.” – Beverly D.
“When I see an acquaintance on the street, I wave and keep walking. I can’t stop to chitchat because I’m not able to talk and stand at the same time. It’s really awkward because sometimes people are calling out after me but I cannot stop to talk. I’m sure they think I’m snubbing them but I just can’t do it.” – Kathryn C.
“I isolate myself. I don’t want my family to see how much pain I’m in so I hide.” – Shayla F.W.
6. Zoning Out From Reality
“I zone out from reality and get caught up in feeling so horrible all I can do is lay there and take it. Chronic pain, fatigue, nausea, the works. I don’t talk. My appetite dissolves. I am just miserable in my own world until my medication kicks in, if it does. No one really realizes until they ask me something and I don’t respond the first few times.” – Cheyenne C.
“I completely zone out and detach myself and no one else even knows that I’m doing it. I have somehow learned to still function in a pain flare by detachment from my pain, etc. until I can get myself home.” – Nicole P.E.
“Basically staying in bed and silent. I’m like in a zombie state and fighting my thoughts. It gets really exhausting.” – Martha C.
7. Getting Irritated With Others
“I get irritated, can’t think straight, so people usually think that I am in a bad mood, or targeting them, or that I misunderstand them. But no. My body is screaming and I am trying to cope with that.” – Nick B.
“I get irritable. I so don’t mean to. I look and sound distracted because I’m doing meditation or self-hypnosis to get the pain under control.” – Colleen S.
“I get snippy with my kids… I don’t mean to… I’m lucky enough that they understand… but they don’t deserve it.” – Merri E.S.
8. Wearing Different or “Unusual” Clothing
“Whenever I’m wearing a loose-fitting top and stretchy bottoms or a big flowing dress, eight out of 10 times it means that I’m having complications from my gastroparesis. I have an entire stash of looser work clothing just for this purpose. Most people just think I’m being fashionable!” – Emily E.
“Wearing sleeves in dreadful heat. My skin is either so sensitive and painful that I am wearing Bengay or wraps and trying to hide the smell oooor the sun is so bad, it will make my skin flare.” – Alexandria B.A.
“I don’t sit – or even stand – still. I shake my leg or sway to keep my blood from pooling. If I sit still and then try to stand up, POTS goes ‘nope’ and best case scenario: my vision will go black, I’ll get dizzy, and my whole body gets that tingly feeling like when a limb falls asleep, and have to sit back down. Worst case scenario would be passing out.” – Ansley D.M.
“I rock back and forth to focus my mind on that rather than the pain, or fidget my feet and legs for the same reason.” – Madi Y.
“I shift my weight from one foot to the other when standing still because I can’t take all of the weight at once.” – Amy R.
10. Struggling to Maintain Conversation
“Having conversations when I draw blanks on words, what I was saying, etc. Also, when I lose my point and the conversation goes wonky altogether.” – Valerie M.B.
“I tend to zone out and have short-term memory loss due to my TBI. I’m not ignoring what you say and I’m not trying to be rude or forgetful. My brain just can’t hold onto recent information. It’s embarrassing and frustrating because people don’t realize it’s something I can’t control.” – Katarina M.
“Pain flares cause my brain to shut down. I freeze, zone out, can’t talk to people or understand them. There are businesses I avoid because I embarrassed myself in front of the staff.” – Elsie G.
11. Relying on Distractions
“I start focusing heavily on my phone or a game, keeping my attention heavily on something really helps to distract me from the agony. It’s difficult at times, but it’s the only thing other than heavy painkillers that helps.” – Jessica J.
“Keep one headphone in. Music really helps distract me from the flare. Some people find it rude, but I need to use whatever helps.” – Kristin N.
12. Staying Quiet
“I get really quiet when my pain is high. It’s hard to concentrate during a social gathering. If it’s really bad I retreat and stay home.” – Jenny W.S.
“When my illness is flaring I withdraw and am super quiet.” – Elaine W.
“I become quieter, less sociable and remove myself as much as possible from over stimulus especially when I’m trying to be ‘normal.’” – Lola L.
13. Planning Ahead
“Plan everything from what I’m doing today or tomorrow, to how to get up without causing a dislocation.” – Jade W.
“I set my alarms extra early so I can sit on my heating pad, take my medications, and limp around with my arthritis getting ready to leave the house. I also have to bank in time if my Crohn’s keeps me in the bathroom longer than I’d like. No one understands why two hours before I have to leave sometimes feels too close to me.” – Maddi L.
14. Taking Frequent Breaks
“I take more bathroom breaks or ‘step out’ to just be away from people and take time to re-gather myself… repeatedly.” – Deanna S.
“Sleep more, less social, take more bathroom breaks.” – Raqueila C.
15. Stretching or Cracking Body Parts
“Move my head from side to side, rotate my shoulder, bend my knees up and down, rotate my wrist and ankles, move my jaw from side to side, lift my shoulders… The list goes on!” – Angela C.
“Stretching my shoulders, cracking my bones in the sore places or rocking side to side.” – Kyrra W.
Read the stories below to find out how our Mighty community copes during a flare-up:
Photo by maxime caron on Unsplash