10 Things You Shouldn’t Say to Someone With a Chronic Illness

I am sure that you, as someone suffering from one (or more) of the above, have encountered people who just don’t get it. First of all, I feel the urge to say this: YOU ARE NOT ALONE! Sometimes, it’s just hard to find a quick response, because the few words that have just been thrown at you are shocking. Trust me, it happens to all of us.

It can get pretty frustrating, pretty quickly. That’s why I have come up with a list of 10 things people shouldn’t say to a person with a chronic illness, not only to educate healthy people about how to approach someone about whom they have no idea, but also to help YOU with some of my favorite responses. Now, I wouldn't say that I am so brave to use every single one of them in person, but I’m pretty proud of how they sound when I think about them in connection with some past encounters I’ve had.

1. You don’t look sick

Well, I didn’t know I had to change colors for you to notice! Also, if that was supposed to be a compliment, no, I don’t thank you. Not all illnesses are visible from the outside, and that does not make them any less serious.

2. It could be worse/you are lucky it’s not deadly

Dude, thanks so much! It might not be deadly, but it's kinda debilitating. Don’t make it sound less important just because I don’t sit in a wheelchair or because I’m not lying on my death bed.

3. Have you tried yoga?

Well yes, I have, thank you very much. However, I haven’t found its magical properties that miraculously cure incurable afflictions.
While a regular yoga practice really does help with the pain a little bit, it’s not a cure for everything. I had been practicing yoga long before I was diagnosed with axial spondyloarthritis (AxSpA), and wow, I am still not okay. Who would have thought?

4. Have you tried changing your diet/going all-natural?

Dude, do you really think that if changing my diet worked, I would still need so many pills, injections and God knows what else? Believe me, I tried and guess what? It did not change a thing.

5. How is it possible that you still have hair on your head?/Aren’t you worried about the strong medicine you have to take?

Well, my friend, you may not believe it, but after months on biologics plus Metothrexate, I wonder about that a lot, thanks for reminding me! Yes, of course I am worried! But have you found a miracle, med-free way I don’t know about? DO SHARE! Because if there was one, I could avoid stomach issues, possible infertility, nausea, practically non-existent immune system, pain and many other unpleasant parts of my life which I would happily live without…

6. So if you use CBD, are you constantly high/are you addicted to marijuana?

Awfully sorry to upset your narrow-minded brain, but the fact that I religiously use CBD, CBG, and all the good stuff gives you no right to make me look like a drug addict! Actually, to the contrary, the products I use are stripped of THC, which is the part of cannabis that causes a "high." Maybe, just maybe, if you used your remaining brain cells for research, you would know. And no, cannabidiol products don’t cause addiction.

7. Everyone’s back hurts from time to time

Well thanks dude, for letting me know, who would have thought? But again, do your research if you want to have a say about it. AxSpA does not only cause back pain. It can affect eyes, guts, skin, brain, and basically any bone or joint in your body. And! Can cause serious mental problems as well.

8. Gosh you are so lazy, you are always in your bed

What a nice thing to say to a person who suffers from chronic fatigue as a result of their illness or experiences stiffness after a longer sedentary period. But try to imagine not being able to stand up from your bed because your arms and legs are buried under a layer of concrete. Got it? Now we can talk!

9. You should try smiling from time to time, depression doesn’t suit you

First of all, do you have special eyesight that can diagnose a person at the first glance? If not, how the frick do you know if someone suffers from depression? Of course, it may very well be the case, many of the biologics can cause and/or intensify a depression. However, it can be immensely difficult to smile for various reasons, such as enormous pain, fatigue, or just having a hard time coping with the illness in times of a flare-up.

10. You are not sick, it’s in your head/you can do it, you are just imagining it

The worst thing is when you hear something like this from a person who should know better because they are supposed to be the expert on your problem or just someone who has promised to support you no matter what.

And yes, I’ve experienced both cases on my AxSpa journey. The “it’s in your head” idea was actually something I had to fight with for months because I did really believe that my major problem was in my head. I ignored the symptoms and suffered through pain because I thought that I am cuckoo for realz. The breakthrough finally came when I couldn’t walk anymore and was hospitalized for the first time.

I’m sure there are more things that should never be uttered by a person who has no idea what they are talking about, these are just the few I get asked a lot. I guess my point is, dear fellow Spoonie warrior, do not ever let yourself be shamed or let down by a gatekeeper and a smart-ass who wants to belittle something that changes and influences your life with every single breath you take. You are amazing and capable of anything you put your mind to.

In times of pain and suffering, remember this: anything they can do, we can do in constant pain… So who’s the badass?