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32 Things People Don't Realize You're Doing Because of Chronic Illness

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If you live with a chronic illness, you may find yourself adopting certain routines or behaviors that help you manage your symptoms. Some things might be obvious, like taking your medication, but other habits are more subtle. A casual acquaintance may not recognize that your actions and decisions are all-too-often based upon what’s best for you and your health.

To better understand the ways in which people manage and respond to their conditions, we asked our Mighty community to share things other people don’t realize they’re doing because of their chronic illness. Maybe some of these will sound familiar to you, too.

Here’s what the community shared with us:

1. “Sleeping. A lot. People think I’m lazy. That’s not the case. Everything is just so damn exhausting for me. I took a shower yesterday and I had to take a nap after.”

2. “I automatically say no to any unplanned activity. Firstly, I need time to rest before I do most things. Secondly, leaving the relative safety of my apartment, where I have unlimited access to water, food I can eat, air conditioning, fans, changes of clothes, incontinence supplies, pain relievers and a quiet place to lie down takes a ton of planning and preparation. Even a quick trip to the grocery store can knock me out for a day or two if I haven’t planned rest before.”

3. “I carry my journal around so I can write notes about symptoms, food reactions, etc. so my healthcare team can see them. I am in the process of more diagnoses, so it helps to see the notes I write daily.”

4. “Type as much as I can rather than writing. My hands hurt and holding a pen or pencil doesn’t help. I also only have certain silverware I like to use, because again, the handles don’t hurt my hands.”

5. “Finding a chair or bench and sitting down most of the time instead of standing to converse or interact. I have definitely gotten odd reactions for doing that, whether in a public setting or visiting in someone’s home.”

6. “Wearing clothes that are too big for me because they don’t rub on my skin and joints and cause pain as much as clothes that actually fit me.”

7. “I read the ingredients list on all of the processed foods people offer to share with me to see if it will trigger my migraines. Because I am a health teacher people think I’m reading the nutrition label and judging the food. I’m not.”

8. “I have to move slower or else I’m prone to bumping into things and hurting myself. I am also not very active because of chronic pain and how fatigued I am all the time. When I do choose to do a physical activity, it takes me much longer to recover from it than a normal person. I think people might view me as lazy. But they have no idea I’m inactive because I’m in pain 24/7.”

9. “Popping my shoulders back into place. People think I’m just stretching, but I’m actually trying to fix the fact that my shoulders fall out of socket so often.”

10. “I hardly ever wear makeup anymore. 1. Because it takes so much energy to do. 2. Because if I look healthy and happy, people are less likely to believe that I’m in a lot of pain. If I don’t wear makeup, the dark circles under my eyes and the pained expressions are more visible. People are more gentle and understanding with me if I ‘look sick.’ I love and miss wearing makeup, but I hardly ever wear it since my health got worse.”

11. “I allow people to go up/down stairs in front of me. They hurt me so bad, [and] I don’t want to slow others down.”

12. “Taking so many breaks. Yes, I’m 24, but laundry gets exhausting when you have a bulging disc in your spine, migraines and fibromyalgia. I may take frequent breaks but I need them to be able to get through my full day.”

13. “Isolation. I always feel exhausted and even conversations are overwhelming. It’s easier on my body to stay home and avoid the overstimulation and migraine triggers. Plus, it is hard seeing the disappointment on my friends’ faces because I am not able to do the things I used to do and it’s exhausting attempting to convince them to try to understand.”

14. “Always having something to drink with me because I get dehydrated really easily which adds to my weakness and lands me in the ER.”

15. “When making plans I ask for exactly how much walking will be involved. People think it’s an odd question, but I need to know. I can only go so far.”

16. “I don’t always answer texts or calls the day of because I feel that bad. When I’m out though, I pick up my phone a lot, but it’s to write down something you say or something I think of because if I didn’t, I’d forget because of constant brain fog. This is probably frustrating to people who see, because if I’m notorious for not answering, why do I have my phone on me with them?”

17. “Carrying smell-good stuff with me. I do this because I have a super sensitive sense of smell (my friends say I have a bionic nose – in reality it’s just part of my fibro). If I smell something unpleasant that other people can’t even smell, I can stick my nose in the smell-good item I have to keep myself from vomiting.”

18. “Stand up to transfer from my wheelchair. I can stand, and even walk, despite using my wheelchair everywhere in public, but I’m not strong enough to lift myself in and out of the car, so it’s just easier to stand, despite the looks I get from people.”

19. “I change positions a lot when I am sitting upright. Makes it look like I am fidgeting but really I am just trying to find a less painful position.”

20. “Packing a ton of luggage on the rare occasion I travel anywhere. It’s not that I want to be super high maintenance! But I need different clothing to account for different ways I may be feeling where I’m going. (Will I be running hot or cold? Bloated and unable to wear leggings under my skirt if it’s cold? Will I need to wear my flat sandals or the ones with higher arches for comfort day to day?) And then there’s the medications, not to mention I need my own pillows, a cane [and] a walker now.”

21. “Always walk close to a stable object such as a wall, railing, countertop, etc. in case I feel myself getting lightheaded or shaky.”

22. “Carrying around an ice pack because I have a fever every day.”

23. “I almost never sit ‘like a lady.’ My legs are always propped up somewhere. Even in the car, they are on the dash if I am the passenger. Any other position is just too achy.”

24. “My aversion to talking on the phone. My entire world is wrapped around my health, so much so, for one thing, I don’t know how to hold a “normal” conversation; and the second reason is the fact that my memory and speech pathways have been damaged due the medications my doctor had me on a few years ago. People think I don’t call because I don’t care, but that’s simply not the case.”

25. “I try to avoid going places with friends that involve eating out because I’m limited on what I can eat without getting sick. I also avoid new foods because I’m afraid I will get sick from them. There are days my stomach does fine and other days I’m stuck in bed due to my stomach problems.”

26. “Cancel plans at the last minute. It’s so hard to predict when I’ll feel well enough to go out.”

27. “Sometimes I hide or disappear into my room when we have company. It’s not that I don’t want to socialize, it’s that I’m exhausted from my day, doing all of my medical treatments and I just need to rest.”

28. “I usually take the elevator even if I only need to go up a short staircase. I have such limited energy that I really have to conserve it the best I can. To onlookers it often looks like laziness though.”

29. “I’m loud and I laugh all the time because I know if I don’t do that I’ll start thinking about the pain and want to go crawl back into bed. I do all sorts of things to preoccupy my mind and body off the pain, whether that’s being fidgety or talking your ear off.”

30. “Some people in my life forget my flighty memory is mostly due to my disease, not my inability to pay attention to them.”

31. “Deep breathing when the pain becomes unbearable and I am out somewhere. Taking long, deep breaths helps and I have learned to do it so it appears to be my normal breath.”

32. “This may sound odd, but smiling. I’m not as happy as I pretend I am, but I can act like I am. When I’m in pain, I smile through it. When I’m tired, I smile through it. When I’m nauseous, I smile through it. I smile through as much as I can. It doesn’t make everything simple to deal with, but it makes everything seem a bit better.”

Originally published: August 1, 2017
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