30 Things People Don't Realize You're Doing Because Of Your Chronic Illness

Photographed by Rochelle Brock.
If you fight the daily battle of chronic illness, you’ve probably picked up some habits, behaviors, or coping techniques that help you manage your condition and navigate everyday life. But these battles aren’t always visible to those around you. It can be difficult to know exactly what it means to be a “chronic warrior” if you’ve never experienced chronic illness yourself.
To shed some light on the struggles those with chronic illness face, we asked our Mighty community to share things they do that others don’t realize they’re doing because they are chronic warriors. This is the reality of fighting a battle with your body every day. Friends may not always understand what another person is going through, but they can refrain from judgment and instead offer support and encouragement to the chronic warriors in their lives.
This story was originally published on The Mighty, a platform for people facing health challenges to share their stories and connect.
1 of 30

I wish others understood.

“Celebrating the little accomplishments. It could be showering or simply sitting outside for five to 10 minutes. I may feel pride and talk excessively about getting out of bed and making myself a meal or looking up when I walk. My friends may not be able to understand how huge this is for me and get annoyed and it can be heartbreaking. They might say, ‘You already said that,’ or, ‘I do that all the time.’ I wish others understood.”

– Sierra A.
2 of 30

I’m not lazy.

“I take elevators because climbing even a few stairs is painful and I don’t work full days. The truth is, I’m not lazy; I struggle with chronic pain, endometriosis, postural orthostatic tachycardia syndrome (POTS), migraines, and an autoimmune disorder. I have to conserve my energy and not waste it on things I can take shortcuts on.”

– Tracie G.
3 of 30

I constantly am consuming salt.

“Drinking lots of Gatorade or Pedialyte or overdoing the salt on my foods. I have POTS and Ehlers-Danlos syndrome (EDS) and I am on a high sodium diet. I constantly am consuming salt. Most people think I just really like Gatorade or salt but really I’m doing it to not pass out.”

– Elise S.
4 of 30

I feel way too bad to be nice.

“I socially isolate. Most people just think I don’t like going out or seeing other people. Mainly, I feel way too bad to be nice and make small talk in social situations. I have fibromyalgia, rheumatoid arthritis, and lupus. Between those three, I never feel like inane chatter.”

– Leslie M.
5 of 30

I’m still coping with the loss of my old self.

“[I] project my anger. I hate to admit it, but I tend to be mad about being in chronic pain, and I’m still coping with the loss of my old self. Oftentimes, I am short-fused and snap at the people around me, even though it’s not them I’m angry with. I’m mad about being in prolonged pain.”

– April R.
6 of 30

Sometimes the pain just takes over.

“Zoning out. Sometimes the pain just takes over and I can’t focus on what you’re saying. It’s not a lack of interest, but a lack of pain control.”

– Jenny S.
7 of 30

This gets interpreted as not caring.

“I often don’t tuck my shirt in because the tension and pressure in my abdominal area is too intense. I’m trying to give it room. This gets interpreted as not caring, lazy, and is especially problematic in a work context.”

– Mark S.
8 of 30

I’m quite frankly dealing with being tired all the time.

“[I] take frequent naps. Or put off cleaning my room. I have chronic migraines and many other things still undiagnosed. And I’m quite frankly dealing with being tired all the time and I just can’t seem to have any energy to push myself to do certain things when I have down days.”

– Keirsten W.
9 of 30

I still want invites.

“I’m pretty flaky. And it blows, because after not showing up to a number of events, you stop getting invites altogether. I still want invites so I can decide if it’s appropriate for me to go or not. And after being guilt-tripped, a heavy sense of obligation forces me to attend events even if mid-crisis. Warriors are professionals at faking it until we make it if it means feelings are spared. Even at our detriment.”

– Zoporia C.
10 of 30

Not being able to shower.

“Not shaving my legs. Also not being able to shower as often as I should.”

– Tori M.
11 of 30

On bad [days] I can’t even get out of bed.

"Taking extra time to enjoy small things like birds singing, the flowers, good coffee, etc. on good days, because on bad ones I can’t even get out of bed.” – Courtney H.
12 of 30

I have to wear Depends.

“My meds are messing with my bladder. I have to wear Depends sometimes. It’s a wee bit humbling as a 37-year-old.”

– Kristy M.
13 of 30

I can’t sit up all of the time.

“Look for the most supportive chair to slouch [in] and lean on the arm of the chair because I can’t sit up all of the time. Most people think I’m just sitting casually but I’m actually in excruciating pain.”

– Brittany S.
14 of 30

I am constantly aware of my body.

“People don’t realize I am constantly aware of my body. The pain is always present and is more of a question of where it has migrated to and how bad it is. I am always doing a full-body assessment to measure pain, swelling, fatigue, dizziness, headache, etc. I cannot leave the house without backup meds and supports. I am constantly planning ahead because I [struggle] greatly when I don’t have plans in place and my symptoms ramp up. Some days are just so hard.”

– Michelle M.
15 of 30

I know what my limits are no matter what.

“I’m not overdoing it on days I can do things. No matter what, I will pay for it the next day. But I know what my limits are no matter what. So if I’m hurting the next days… it’s not surprising to me. I know what’s worth it and what’s not.”

– Joey S.
16 of 30

People just think I’m picky.

“Eating a strict diet. People just think I’m picky and pretentious. I try to explain it’s my anti-inflammatory diet, but they just don’t get it.”

– Kelly C.
17 of 30

If I don’t focus on the good I’ll wallow in misery.

“Sometimes I’m quiet to mentally brace myself for the next wave of pain. Sometimes I overcompensate [with] laughter because I need a distraction. Sometimes I feel the need to talk about obvious or insignificant good things because I know if I don’t focus on the good I’ll wallow in misery.”

– Mariah M.
18 of 30

I never know when I’m going to be taken out.

“Being so on top of things. People think I’m awesome and organized and so ahead, but the only reason I am is because I never know when I’m going to be taken out for a few days and get nothing done. If I’m not ahead of the game, I’ll be so behind after a bad few days or week that I won’t be able to recover. So I’m ahead of the game a lot.”

– Jacqueline B.
19 of 30

I silently fight the urge to grimace from the pain.

“Putting makeup on. I love going sans makeup and wearing casual clothes, but on my bad days I take the extra time to put on makeup and a nicer outfit so people can’t see the pain and wear on my face. They compliment my clothing choice and fresh makeup while I silently fight the urge to grimace from the pain or collapse from the fatigue.”

– Alicia W.
20 of 30

[I] carry a backpack and purse everywhere.

“[I] carry a backpack and purse everywhere with everything I may need – meds, braces, sweater, yarn and hook (or knitting needle), journal, paper, patterns, pens, gum, food, etc.”

– Kelly V.
21 of 30

I keep pressing forward.

“I keep pressing forward in a positive manner no matter how tired I am or how much it hurts.”

– Donna M.
22 of 30

I just want to be comfortable.

“Packing way more clothing and shoes than I may actually use for a trip. I never know how my skin or feet will feel from day to day or even hour to hour. I’m not vain, I just want to be comfortable.”

– Stefanie D.
23 of 30

Saying, ‘I just stayed in’ gets you a lot of judgment.

“Lying about my activities. When you work and everybody asks you about your weekend, always responding by saying, ‘I just stayed in,’ gets you a lot of judgment. I just have to make up things I did and hide my emotions when other people tell me (and show me pictures) of what they were doing.”

– Amanda P.
24 of 30

I can’t afford to worry about outfits.

“My style, the clothes I wear, are not chosen based on their aesthetic, they are chosen based on what’s going to cause me the smallest amount of pain [and] what’s going to be the most useful throughout the day. I can’t afford to worry about outfits anymore.”

– Melissa M.
25 of 30

You never know who else is also fighting this battle.

“I defend people I don’t even know. I know what invisible chronic illness is like, and you never know who else is also fighting this battle. I’m compassionate towards everyone I meet for that reason.”

– Joanna G.
26 of 30

I do everything in baby steps.

“I do everything in baby steps, even the simplest things. From just getting dressed to cleaning to doing laundry to cooking, I have to slowly pace myself, while constantly stopping to reassess how much energy I have left or if my symptoms are worsening. I often feel guilty because so much of my focus is on myself, but it’s the only way for me to be able to do anything for or with those around me.”

– Donna P.
27 of 30

I try and get a definite ‘end time.’

“I’m constantly budgeting time. If I’m at an event, I try and get a definite ‘end time’ so I can tell myself, ‘You only have to make it two more hours.'”

– Jaimee J.
28 of 30

I forget. A lot.

“I forget. A lot. I have to write things down so I don’t hurt my kids’ feelings. It’s frustrating for my family.”

– MaryAnn T.
29 of 30

I never wear jeans.

“[I] almost always wear leggings. I never wear jeans because I never know when endo belly or IBS (or just plain chronic pain in general) will creep up and make the jeans unbearable!”

– Jessica U.
30 of 30

[I'm] fighting.

“[I'm] fighting. Every minute of the day, day after day, month after month, year after year. Fighting the war inside my body, my doctors, and sometimes even loved ones. It’s the hardest thing I’ve ever had to do.”

– Kari M.

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