I’m a chronically ill person. I’m not quite ready to embrace the word “disabled” just yet, but I have no choice but to accept that I have chronic illnesses. I have had these most of my life. They are just catching up with me as I get older, and they’re now easier to spot, though not always.
Many people in my life don’t know I’m chronically ill. Most of the time, I prefer it that way, for various reasons. Some of these reasons are because of things I wish people knew, but I just don’t have the energy to explain. Perhaps this post will help clarify things.
Here’s what I wish people knew about chronic illness.
1. Not all chronic illness is visible.
Most of the time, unless I say something, people won’t know I’m chronically ill. I wear pants that cover my knee and ankle braces, my S/I joint belt is usually under a sweater, my finger splints look like rings, and most people assume I’ve injured my wrist if they spot my custom brace. My illnesses aren’t always visible. Some days, they’re more visible than others, but for the most part, you can’t tell if someone is ill or disabled just by looking at them.
2. Chronically ill people aren’t faking.
It’s been a while since I’ve been questioned about my illnesses. This mostly happened in childhood. “She’s just looking for attention” was a common explanation for my symptoms when I was young. But even so, I’m still nervous when I need to use an accessible washroom or take the ramp or elevator instead of the steps, or when I need to sit down in social situations where people are expected to remain standing. I always feel judged. Perhaps it’s all in my head. But perhaps it isn’t.
There are so many chronically ill and disabled people who have been harassed for parking in accessible spots, called lazy for using mobility equipment, being fat-shamed for having lymphedema (not that fat-shaming is OK in any situation) and the list goes on. I wish people knew that you can’t know if someone needs a service just by looking at them.
3. You’re not an advocate for disabilities when you harass disabled people.
Related to the above, many people feel they’re helping disabled people by yelling at the “able-bodied” person taking up the accessible parking spot, or that they’re looking out for someone’s best interest when they suggest someone needs to lose weight.
Often times, you’re harassing the very people you’re pretending to help. Because you can’t tell if someone is chronically ill or disabled just by looking at them. You don’t know why someone has gained weight, and you don’t know someone’s health status based on their body type.
You don’t have enough information to make a judgement about someone you’ve only looked at for less than a minute and with whom you’ve never had a conversation. Always assume the best of people. If they’re using a service, assume they need it. If their body doesn’t fit your ideal of beauty, look elsewhere and mind your own business.
4. I don’t want your cure.
I have an excellent team of health professionals helping me live my best life while taking into consideration the limitations I face. I am finally learning to love my body and listen to it. I never, I repeat never, want your cure or advice. Especially if your cure comes in the form of a multi-level marketing package.
But even if you feel that you have my best interest at heart and you’re not trying to sell anything, I still don’t want to hear how to take care of my illness from a person who has little to no knowledge of my conditions, and who is certain to have zero experience living in my body. Learn this lesson as soon as you can: if someone hasn’t asked for your advice, they don’t want it. This is especially true of people with health conditions.
5. You’re not entitled to my personal information.
I personally don’t mind answering questions about my illnesses (as long as you’re not trying to sell me a cure). But at the same time, I don’t want my life to revolve around them either. It gets tiring answering questions all the time, and even more tiring deflecting people’s advice about how to live my life/manage my health.
You’re not entitled to intimate personal information just because I have chronic illnesses. If you wouldn’t ask a random, healthy stranger about how they manage their bedroom life, don’t ask me, either. By the way, same goes for pregnant women. If you wouldn’t make comments about a random person’s body, don’t do that to a pregnant woman. It got so exhausting during my pregnancies when all people would see was my body and not me. Speaking of exhaustion…
6. Chronically ill people are often exhausted.
If I turn down an invitation, it’s not because I’m a flake or I’m avoiding you. Sometimes, I just don’t have the energy to go out, and on high pain days, I’m not very good company anyway. Also, I’m highly unlikely to go out during the pandemic unless I really need to do so. Please be patient and understand that sometimes, we just need to rest. This is true for a lot of people, not just those of use with chronic illnesses.
7. I still want to be invited
Just because I’ve turned down your last three invitations doesn’t mean I don’t want to be invited. Even if I can never make it out, I still like to know you’re thinking of me and would like to see me.
8. Chronic Illnesses Fluctuate.
One of the reasons I have a hard time with the “disabled” label for myself is that I view a disability as a permanent thing. Chronic illnesses, on the other hand, while permanent, tend to fluctuate, sometimes wildly, in how they affect the people who have them.
For example, I can’t and I shouldn’t run or do other high impact activities. Some days I have a hard time even walking for a long period of time, let alone run. But some days, I am feeling OK, and I might run around the yard with my children (even though I shouldn’t). Some days, I may need to sit down for most of the day, while on others, moving around will actually help my pain. A few years ago, I was running triathlons. I shouldn’t have been, and all that running did unrepairable damage to my very unstable joints. Someone who saw me run a few years ago may have a hard time understanding why I can no longer run now.
There are some chronic illnesses that can go into complete remission, such as multiple sclerosis, among many others. That means you might see someone in a wheelchair today and walking around without any mobility aids tomorrow. Not to mention, ambulatory wheelchair users exist. Many chronically ill people face accusations of “faking it” because of these fluctuations. Please, stop punishing us for having good days. And again, always assume the best of people, especially if you don’t have all the facts.
9. I really, really, really, don’t want your diet and exercise advice.
It’s not just that you have zero experience living in my body and probably know nothing about my conditions. It’s also that I’m a former registered kinesiologist and my sister is a dietitian. It’s also that I have a close relationship to the medical professionals who actually know what’s going on with my body. I already have all the information I need, from reliable sources.
Even if you’ve “spent your whole life studying nutrition,” I still don’t want your advice. Even if you’re a “certified personal trainer” or a CrossFit instructor (especially if you’re a CrossFit instructor), I still don’t want your advice. Even if your cousin’s sister’s wife’s neighbour “cured” the same illness I have by going on this diet or taking that supplement, I still don’t want your advice.
This goes hand in hand with “I don’t want your cure.” Does this sound harsh and impolite? So does your constant need to fix me.
So, if you’re curious about my conditions, I’m happy to tell you what they are and how they affect me. However, not all chronically ill people want to share their personal lives with random strangers, and I guarantee it that almost all, if not all of us, do not want to tell you about the personal issues we face just so you can tell us how to live our lives.
Want to help us?
See us as more than our illnesses. See us as more than our disabilities. For a long time, I stayed mum about my health conditions, because I just couldn’t stand how people would immediately make assumptions about my abilities of lack thereof. But I’m done with that.
My chronic illnesses are part of who I am, and although I’m not my conditions, they’re still a big part of my life. Having said that, my conditions don’t have me, I have them. I am capable, even though there are some roadblocks in my way.
7 thoughts on “What I Wish People Knew about Chronic Illness”
A very thoughtful essay on what it’s like to have a chronic illness. I can feel your pain through your words. Take care and just continue doing the best you can.
A very thoughtful essay on chronic pain. I can feel your pain through your words. Take care and just continue doing the best you can.
Thank you for reading Marg. I am deeply grateful for your support of my writing.
Great info! Sounds like you’ve been subject to loads of unsolicited advice! People need to learn when to shut it!
Thanks for your comment, Alice! Yes, I sure have been subjected to all kinds of unwanted advice… it gets old.
I love this, thank you for writing it! I’m sharing now and totally agree, it’s hard enough living with it, we don’t want to keep reliving it thru every conversation.
Thank you Jenny!