17 'Rude' Things People With Chronic Illness Do for the Sake of Their Health
When you live with chronic illness, your health is often much more fragile and volatile than the average person’s. It takes a lot of trial and error, planning and teamwork with your doctor(s) to figure out how best to manage your symptoms. Sure, this often means medication and treatment, but it can also mean lifestyle adjustments and practices you implement in your day-to-day life, such as going to bed at the same time every night or limiting the amount of activities you’re involved in.
Over time, those of us with chronic illness figure out what practices are best for our bodies – and we also know that our actions and choices can have major consequences. Because our health is so fragile, we often need to be strict about our needs and our boundaries — and that’s completely OK. The downside is that certain behaviors or practices we employ to protect our health can sometimes come across as “rude” to those who don’t understand – especially if our illness is invisible. The majority of the time, those with chronic illness probably don’t mean to be rude, but the misunderstanding can still lead to hurtful judgment or conflict between the two parties.
We asked our Mighty community to share the things they do for the sake of their health that others may perceive as “rude,” in order to raise awareness and promote understanding (rather than judgment) of how those with chronic illness may behave as a result of their condition.
If you think someone with a chronic illness in your life is behaving rudely, consider giving them the benefit of the doubt – you never know the full extent of what a person may be going through. Even if someone is being rude, it never hurts to spread kindness and compassion.
Here’s what our community shared with us:
1. Not engaging in conversation
“Not engaging in conversation or activities to go sit on the couch. And not engaging fully in conversation when I do, because my full personality can’t show because I’m in pain or my brain or adrenals aren’t working well.” – Kelsey W.
“I will stop talking to people or go quiet. People think it’s being rude but really, it’s the only break I get.” – Amy L.
2. Saying “no”
“Tell people ‘no’ if I can’t do something. If they ask me to carry something too heavy or run an errand that I know will put me in extreme pain for the next two days, I’ll say no, I’m sorry, I can’t at the moment.” – Camara B.
“I have learned that’s it’s OK to say, ‘No, I physically can’t do that.’ I used to just put up with it just so I didn’t have to put up with the eye rolls and the ‘you’re just lazy’ comments. I still get them but hey, if it will cause me pain than I just won’t do it. If they can’t understand that then I no longer have room for them in my life.” – Courtney D.
3. Not attending events
“I don’t go [to] most events or get-togethers and people think it’s because I don’t care. I want to be there but I’m imprisoned by my illness.” – Heather M.
“I don’t attend functions with my husband (caretaker) as I don’t want to interfere with him relaxing and enjoying the companionship of his friends and family… his break from me. They are not ‘completely’ aware that this is not a temporary illness and consider me antisocial and rude.” – Johnna C.C.
“Stay home when I have engagements because of pain and fatigue.” – Megan H.
“Bail on plans. I always feel seriously awful and it can cause arguments or people to think I don’t like them. But sometimes you have to do it or you know you’re not going to be getting out of bed tomorrow…” – Alex J.
4. Asking not to be interrupted
“Telling coworkers to ‘hold on for a minute’ when I’m in the middle of something and they come to my office with questions, etc. I get brain fog really bad and if I don’t finish what I’m doing (typing an email for example) before moving on to that conversation I get even more confused and have trouble picking back up where I left off.” – Angie A.
5. Wearing sunglasses indoors
“Wearing my sunglasses everywhere because of light sensitivity due to migraines and chronic daily headaches.” – Lauren T.
“Wearing sunglasses indoors. Sometimes the lights inside places are just too much for me and I have to keep sunglasses on.” – Kayleigh B.
6. Staying away from sick people
“If I know someone is sick with an infection, I keep away. Because I know that it will last longer for me and be a lot worse if I was to have it. Some people may think it’s rude, but I’m on immune suppressants so I need to look after myself or I can end up in [the] hospital which they think isn’t possible but it actually really is.” – Nikita C.
“I have CVID [common variable immune deficiency], as well as three other immune deficiencies. They are not yet well-managed, and I am at a high risk for catching infections. When I do rarely get out of the house, I don’t let people touch me. If someone coughs or sneezes in my direction and they are close enough that their germs could get on me, I will sometimes spray my clothes with a little can of Lysol that I carry in my purse. If someone surprise hugs me, I lecture them. I can’t risk getting sick. As low as my IG levels are currently, I would likely end up in the hospital with pneumonia. I don’t want to die, and if you put me at risk by touching me without my consent, you are going to hear about it.” – Patricia H.
7. Using a disability seat or parking space
“Not standing up on a bus when an elderly person is staring me down, because I cannot hold on to the handrails for more than a minute or so; my hands hurt holding, and my back hurts standing.” – Jen A.
“Parking in [disability] spots when my fiancé drives me to doctors’ offices. If someone says something like, ‘I need that spot, you don’t look disabled, how dare you!’ I’ll tell them sorry, I am in extreme pain and my health is more important than your feelings on my health.” – Camara B.
“Sometimes I ask people to give up their seats on the bus if it’s a bad pain day. Because I’m young, this is often seen as extremely rude.” – Alex P.
“When I go to family events, I always try to stay and play with the kids or chat with the other adults but I always end up napping somewhere. Whether it’s in the guest room or on the couch, I’m almost guaranteed to nap at family gatherings. Makes me feel so rude but I can’t help it. Everything is so exhausting.” – Katie P.
“I take naps while my kids are at school. The nausea and exhaustion from fighting gastroparesis and fibromyalgia just hits me like a ton of bricks and I have to lie down. But, my friends and family mostly think that I do nothing and should prep dinner and clean the house or get out more and do something! It’s so frustrating!” – Lisa G.
9. Asking to talk about something later
“Asking to talk about something that is important later or on a different day. Others don’t understand but when my pain is high my brain fog gets worse; therefore my judgment, understanding, ability to problem-solve or think effectively and my memory are all affected negatively. I’m not trying to be rude, in fact, I’m trying to make sure I am communicating when I can give the subject the attention it deserves.” – Cindi R.
10. Secluding yourself
“Seclude myself. Sometimes to be able to cope, I need time to recuperate and be by myself.” – Amy L.
11. Not standing to greet someone
“If I’m meeting someone (new or a friend) at a gathering and I’m already seated, I usually won’t stand up to greet them/shake their hand. I’d rather not stand up just to sit back down, or stand and get involved in conversation while standing. I’m also attached to my service dog and have him situated near me or under my legs, so it takes a minute to get up.” – Courtney M.
12. Being assertive about your needs
“Being assertive about needs, which is extremely hard for me to do. Including basic things like food and having to refuse food. I have to weigh up the social expectation of eating food versus potential sickness later. I have knowingly eaten food so as not to offend and been sick later and I hate myself for it. I am learning to be ‘rude’ to keep myself safe.” – Erica W.H.
13. Asking people not to do things for you
“When people want to overdo for me, as in helping me, [it] takes away control over myself, and I assert my own abilities and need to make my own decisions. At times that can be seen as being difficult, argumentative, unappreciative, etc. Chronic illness does not mean I am incapable of doing anything or of making decisions for myself. I need to be the one to decide for me.” – Sarah N.
“Insist on getting or doing certain things myself. I want to have those small moments of independence while I have it.” – Alexis T.
14. Bringing your own food and drinks
“I bring my own drinks, and sometimes my own food, to other people’s houses and events!! I never know if there is going to be anything there I can eat/drink. And I never know when nausea may hit… always be prepared.” – Elizabeth E.
15. Not responding to messages
“If I don’t answer the phone or reply to messages, especially if it shows I’m ‘on’ social media sites. Sometimes I just don’t want to talk.” – Amanda M.
“Put my phone on ‘do not disturb.'” – Kelly Anne M.
“Not respond for days, weeks or months. Hello, depression.” – Eileen D.
16. Leaving an event early
“Leaving an important event early when in too much pain or too overwhelmed.” – Trace J.
“I withdraw from conversations, I leave to go sit down somewhere quiet, and I never, ever hug or shake hands.” – Jeri M.
“Stop talking or leave – if I’m hurting my mood plummets and I’m not too fun to be around. For the sake of our friendship it’s best I’m not around you when that happens.” – Brody R.
17. Not making friends
“I don’t make friends. I have a very small, close-knit friendship group, whom I love very much, and who are so patient with me on bad days. I can’t go through the time-consuming hassle of explaining my limitations to new people, or deal with the frustration and embarrassment of brain fog and I can’t communicate properly. So now I don’t make idle chit chat at the school gate, I don’t offer to do stuff for others and I avoid drama and politics like the plague.” – Gemma C.