Everyone has their own unique “pet peeves” – things that irk them to no end! But many of those with chronic illness may have some pet peeves in common. After all, there are so many stigmas and misconceptions about illness, and it can be frustrating to encounter the same problems time and time again.
One of my biggest pet peeves is when people just think they can drop by. Like seriously? I have to save energy for when I want to eat let alone taking a shower and getting ready for company. PLEASE give me a day’s notice at least!
We wanted to know what other frustrations are common amongst those with chronic illness, so we asked our Mighty community to share one of their “pet peeves,” and what they wish others understood about it. Though the following scenarios can certainly be a bit irritating (especially when they happen so frequently!), they can also be an opportunity to educate others on the reality of chronic illness.
If you often find yourself growing upset when the following situations occur, share this with your friends and loved ones to help explain why these comments and behaviors can be frustrating, and how a little understanding can go a long way.
Here’s what our community shared with us:
1. When people think it must be “nice” not to work.
“People assuming not working is a choice/luxury.” – Christina M.
“‘It must be nice not to work.’ Either way, if it’s meant goodheartedly as in ‘it’s nice to do as I please,’ or backhanded passive aggressive anger as in ‘you can’t complain because I have it worse working two jobs and you’re on your couch watching TV all day,’ I just hate this comment. Sure, because crushing medical bills and student loan debt for two degrees I’m likely never going to be able to use again, as well as living at doctors’ offices, urgent cares, hospitals and being stuck in the house or bed for weeks is my idea of a ‘nice’ time.” – Kristy K.
“When people assume it must be nice to stay home all day without work/school. I had to quit the study that I always dreamt of doing… It still hurts…” – Lenthe S.
What to remember: It’s not a “vacation” to be unable to work. Not working can have a significant impact on a person’s sense of identity, finances, relationships, sense of purpose and overall quality of life. Spending an extended amount of time at home can, quite frankly, become boring and isolating.
2. When people say, “Just wait till you’re my age!”
“I hate hate hate when people older than me say, ‘wait till you’re my age and feel like me’ or things like, ‘You’re young and healthy, you can do it.’ In reality, at 24, I probably feel like you do at 65, or worse.” – Melany M.
“I jokingly say, ‘I’m too old for that’ all the time because I actually feel too old for that. And then when people are like ‘just wait ’til you’re my age!’ I don’t even want to imagine what I’ll feel like at your age, because if I’m this bad at 20, I know it’ll be way worse by 50.” – Jordan H.
What to remember: Although this comment may often be made good-naturedly, it can actually be hurtful and frightening for many with chronic illness to hear. Even if a person’s disease isn’t progressive, it can still be scary to imagine what the future will be like with their condition. Sure, the average person tends to experience more aches and pains with age, but it’s not funny to joke about how much worse someone might feel when they’re older – especially if they already struggle with pain and other symptoms.
3. When people offer you unsolicited medical advice.
“The unsolicited advice. Whether from well-meaning loved ones or from random strangers who noticed my limp that day, my health and its maintenance is between me and my doctors. Nothing anyone else can tell me about will change that.” – Maddi L.
“Having people tell me what I should be doing/eating for my health, especially when they don’t even know me.” – Alyson A.K.
“Unsolicited medical or emotional advice… I understand you want to help, but I’ve been at this for a while, and odds are I’ve tried it… I really don’t want to feel like garbage every day, truly… telling me to eat right, exercise and reduce stress is like telling me I can be cured if I wasn’t sick… You don’t say?” – Merri E.S.
What to remember: Many of those who offer health advice to their chronically ill loved ones often have good intentions, and simply want to help. But those with chronic illness know their bodies well, and have likely spent months or years trying out various treatment strategies developing a management plan with their doctor. It’s generally not appropriate for those outside their medical team to be offering medical advice.
4. When people say, “But you seemed fine a few days ago…”
“‘You were fine (insert whenever they saw you last).’ I wasn’t fine, I was better than usual, I am a good actress and makeup hides a multitude of things. If I only left the house when I was ‘fine,’ I wouldn’t ever leave.” – Janet S.
“I really hate the ‘but I saw you doing this or that the other day, you can’t be that ill’ but they didn’t see me going back to bed after shopping for 10 minutes, or the meds I had to take before even getting out of the house.” – David L.
What to remember: Many chronic illnesses fluctuate and are unpredictable. A person may feel fairly decent one day, but be completely unable to function the next. Many of the symptoms and side effects may also be “invisible” – so even if someone appears OK, they could be fighting a battle you aren’t aware of. It’s important to remember that just because someone with chronic illness may seem “fine” on a particular day, 1) it doesn’t mean they are, and 2) they could be feeling totally different in an hour, a day or a week.
5. When people say you’re “too young” to be experiencing health issues.
“That I’m ‘too young’ to be feeling the way I am.” – Lolo M.
“When people and doctors tell me, ‘You’re too young to be in that much pain. You’re too young to be disabled.’” – Crystal C.
“I absolutely loathe when people say, ‘you’re too young to be this sick!’ I’m sorry, let me just tell my illness that. Maybe it’s the miracle cure I’ve been looking for! I wish people would understand that autoimmune diseases don’t wait until you’re older to strike, or to not judge based on my age.” – Doni N.
What to remember: Chronic illness does not discriminate. People of any age can be affected – no one is “too young” or “too old.”
6. When people say, “But you don’t look sick…”
“‘But you don’t look sick…’ Please stop saying that.” – Honesty L.L.
“When people say, ‘You look fine though’ or ‘You’re always complaining/there’s always something wrong with you.’” – Angelina A.
“‘But you’re looking good’ – like I have to look bad because I feel awful? Not believing me when I say I feel like garbage today, because I also have lipstick on.” – Emma A.
What to remember: Just because someone might not “look” sick doesn’t mean they aren’t. Sickness does not have a “look.” There are many people who experience symptoms and side effects that are largely invisible – though that doesn’t make them any less real. Though this comment may be intended as a compliment, it can often have the opposite effect of minimizing or invalidating a person’s illness.
7. When those who are generally healthy say they understand and can relate to your experiences.
“When people say they know or understand how I feel… And that I need to just push through it.” – Candy D.
“When people say they’re tired too when I say I’m fatigued. I’m not tired, I’m fatigued. My body feels like I’m trying to walk through quicksand.” – Hayley N.
“When someone can obviously ‘completely understand’ what I’m going through and list one small medical inconvenience they had one time which obviously means they understand what it’s like to be chronically ill and chronically in pain.” – Rebecca M.
What to remember: Every person’s health challenges are unique to them – even if they have the same condition. Although it’s important to listen and try to comprehend what others are going through, comparing your experiences to theirs is typically not helpful. If someone with chronic illness is telling their healthy loved ones about their symptoms, they likely aren’t looking for people to relate, but rather seeking support and a listening ear.
8. When people ask, “Are you better yet?”
“I hate when people close to me continue to ask if I’m feeling any better. They don’t comprehend the chronic nature of my illness. They think I’m going to be magically cured overnight – after six years of asking the very same question and getting the same answer.” – Dawn D.N.
“Stop asking when I will ‘get well.’ It’s infuriating.” – Amy W.
“‘Get well soon’… I know they really wish me well but it’s frustrating because it won’t get any better. It’s chronic and I have good days and bad days but I don’t get ‘well.’” – Marianne B.
What to remember: As the name implies, chronic illness is, indeed, chronic and lifelong. There may be treatments or medications that can help manage the symptoms of chronic illness, but there is no “cure.” A person with chronic illness may have “good” days, or even experience periods of remission, but they will never truly “get well.”
9. When people question how you can be so tired.
“When people question my tiredness. I am tired because it’s how my body functions, it’s as simple as that. Let me have a nap and leave me be.” – Brittany L.
“That I may look OK. But my energy reserves are very low. If I need a nap I don’t like being told I’m like a toddler.” – Tracy L.
“I wish people would understand my need for rest and also not judge me for it. My friend made this comment the other day about how it seems I have nothing to do. And it stung.” – Brittany H.
What to remember: Many of those with chronic illness struggle with chronic fatigue or exhaustion – which is much different than the tiredness an average person may feel after staying up late, or finishing a long week at work. Chronically ill folks may have less energy, require more sleep or feel a level of fatigue that no amount of sleep can remedy. This doesn’t mean they’re “faking” or “lazy.” It’s simply a product of their illness.
10. When people don’t take your illness seriously.
“When people argue with me about what causes me a flare. For instance, perfume can trigger my fibromyalgia. When I’ve told people to keep a distance from me because they’re perfume-y I’ve had people argue, ‘But it’s only a little!’ Or ‘This one is natural so it won’t harm you.’ Even after I tell them it’s too late, I’m already reacting to it, they still try to convince me they’re safe. The root problem here is not respecting what I say. Not listening to my needs and taking me seriously.” – Sarah L.
What to remember: Whether or not a person has a chronic illness, it’s always important to listen to and respect others’ needs. Every individual is the expert on their own body, and if they say they have sensitivities, require accommodations, experience certain symptoms, etc., it’s not the place of others to question or dismiss them.
11. When people encourage you to “just push through.”
“It drives me absolutely nuts when someone says you just gotta ‘push through’ and get stuff done. It doesn’t work like that… there is no ‘pushing through’ anymore. When I hit my wall, that’s it, I’m done. There is absolutely nothing left for me to ‘push through’ with. I used to go like the Energizer Bunny and plow through that wall, but that’s just not my reality anymore. Unfortunately my body is not really my own anymore and it dictates what I can and can’t do. It drives me crazy because this is definitely not the life I want to live. I would gladly ‘push through’ if I could, but it’s just not an option.” – Mallory K.
“Trying to explain to my friend that I can’t just ‘push through the pain.’ I used to be able to push and finish a task and rest, and be OK. Now if I push to finish a task, I can hurt for hours after and have a whole day ruined and all my battery charge gone. There is no rejuvenating. There is no refill button on the energy machine. I just screwed up my whole day.” – Brandi W.
What to remember: While generally healthy people may be able to push through a bit of pain or tiredness to complete a task, for those with chronic illness, doing the same can be dangerous or just plain impossible. Forcing yourself to exert energy you don’t really have can lead to more fatigue and pain the next day, or even ignite a flare-up of symptoms. And sometimes, when a person’s energy reserves are used up, they are truly used up: there is no “deeper well” to draw from.
12. When friends get upset that you’re “flaking” on plans.
“It’s really hard when people think I’m a flake for canceling plans. Like, trust me, I was looking forward to this, too. But my body had other plans.” – Samantha V.
“When they complain that I am always in pain and have to cancel out on plans.” – Iva F.N.
What to remember: If a friend with chronic illness has to cancel plans, they are likely not trying to “flake.” Chronic illness can be very unpredictable, and might flare up at the last minute, preventing a person from being able to go out and spend time with their loved ones. Chances are, they would love to go out! It’s just their illness that’s keeping them from doing so. Please don’t be upset with a friend for canceling, and continue inviting them out – it will mean the world.
13. When people go out while sick with something contagious.
“Sick people! I get some people need the money and can not take off work for every little sniffle, but if you work with the public, are shopping and it can wait, just want to get out for a movie because you don’t want to cancel on your friends or whatever little excuse: Stay home! You are getting babies, the elderly and people with compromised immune systems sick and could literally be killing complete strangers by just sneezing at the grocery store.” – Michelle R.J.
“When people go to work or school while sick with viral or bacterial infections. Keep that to yourselves please.” – Jessica S.
What to remember: If you are sick with something contagious, it is not only respectful but can truly be life-saving to use protective measures so that the disease or infection does not spread. The average person may be able to recover fairly quickly from infections such as the common cold, but some contagious illnesses can be deadly for some people. Many of those with chronic illness have compromised immune systems or bodies that simply don’t function properly, so fighting off an infection can be much more difficult (or even impossible).
14. When people judge you for taking medication.
“My pet peeve is medication shaming. You may think that the medication I’m taking is ‘poison’ or that I’m ‘too young’ to be taking all these pills, but they help me function and get through the day. Healthy people just don’t get it.” – Melize M.
“People thinking that surgery cures everything and there’s no need for pain medication. No surgery helps but as a person with a CTD and 14 surgeries under my belt I still require pain medication to function.” – Bobbie S.
“When people say, ‘Your medication is making you depressed and sick.’ Um no! If it wasn’t for my medication I wouldn’t be here!” – Tina T.
What to remember: Whether or not a person takes medication for their illness is between them and their doctor. If they take meds, it is likely because that is the best option for dealing with their symptoms. We should not judge or shame others for how they choose to manage their health.
15. When people question your need for medical equipment or assistive devices.
“My pet peeve is when others question your need for medical devices/accommodations because to them you ‘look fine.’” – Rachel S.
“I don’t appreciate when people ask me why I’m using specific medical equipment, as if I have to explain my need for it because they assume I’m being dramatic. I don’t want to rely on my medical equipment… I wish they understood it’s helping me be more independent, not limiting me.” – Kristen L.
What to remember: If a person is using medical equipment, a mobility aid or other assistive device, it’s likely because they need it! Even if they don’t use the device 100 percent of the time, that doesn’t invalidate their need for it, and it doesn’t mean they’re “faking” or “being dramatic.”
16. When people think you’re “being dramatic.”
“My pet peeve is being dismissed by people around me who insinuate that I am being melodramatic, even though I have official documentation from my doctors that I actually have things wrong.” – Shannon W.
What to remember: Even if you cannot “see” or comprehend what a person is going through, it doesn’t mean their experiences are any less real or valid. If someone with chronic illness says they are experiencing certain symptoms or side effects, offer them support and compassion instead of brushing off their concerns.
17. When people judge you for using disability seats, parking spaces, restroom stalls, etc.
“I wish people would stop assuming I’m ‘stealing’ [disability] spots on the bus and metro.” – Kari D.
“People don’t seem to realize how hard it is to do most things. Just because I may look like I’m OK on the outside doesn’t mean I feel OK on the inside. Another thing that bugs me is the looks I get when I park in a [disability] parking spot. People give me annoyed looks, I guess they expect to see someone in a wheelchair getting out of the car.” – Claudia M.
What to remember: Whether or not a person needs certain accommodations cannot be determined by their appearance, how old or young they are or if they’re using a mobility aid. Many people live with health challenges that are invisible, so even if they “look fine,” that doesn’t mean they are.
18. When people think you’re just being “lazy.”
“I’m not ‘lazy’ or a ‘hypochondriac’ or making it all up. Life is really hard for me and there’s not a magic pill that will make me feel and live normally again. I need a lot of help now and my brain doesn’t always work the way it should. I wish more people understood that I’m adjusting to this too and I’m doing the best I can.” – Stephanie S.
“When people think I am lazy because I appear like I can do all the things a healthy person does. Especially if my partner has to do the simple things for me.” – Acadia M.M.
What to remember: Chronic illness can cause a number of debilitating symptoms, including pain and fatigue. What some may perceive as “laziness” could actually be exhaustion or the need to rest because of how taxing chronic illness can be.