As someone who’s more often on the receiving end of someone else’s sympathy than giving it, this is really something I needed to hear. When you have two chronic illnesses, one actually caused by the other, you hear some crazy shit from people whenever you voice your worries.
Me: This past flare up made me lose 20 pounds.
Healthy person: Woah, I wish I could lose weight as easily as you!
Me: There are times now when I can’t leave the house for several days in a row.
Healthy person: I wish I could afford to stay home all day.
Me: I’m tired.
Healthy person: I’m tired too.
Me: My IBD is getting worse.
Healthy person: At least it’s not cancer, right?
The surprising thing about all of that is that they all meant well.
Yes, losing weight is great. I’ve been wanting to lose the weight I gained while on Prednisone for some time now, but not by physically not being able to eat or drink anything substantial for several weeks without vomiting violently.
As an introvert, yes, staying home all day is great. It’s not because I want to, though. It’s because I have to. However, sometimes I stay home too long and all I can manage to do is lay in bed and stare at my ceiling. That’s not great.
I rarely actually say that I’m tired. Why? Because I’m always tired. I could get 12 hours of sleep and still need a nap later. When I was in school, I’d make it to class 95% of the time completely exhausted and fatigued. Why? I don’t know. When I say “I’m tired”, the translation is “I’m more tired and/or I feel worse than usual.”
Yes, I’m very glad it’s not cancer, but people with IBD are five times more likely to get any sort of bowel cancer. Fuck you for invalidating the severity of my illness.
Rarely have I ever received empathy from other people. Luckily it’s a bit more common now since I know a fair amount of people now who have chronic physical/mental illnesses, thanks to social media. We ask each other for health advice or about a medication side effect. We complain about how stupid doctors can be. I see them documenting their experiences just as I have been doing. We take selfies in our hospital gowns, trying to make our experiences bearable. We stay connected online because that’s the only socialization we can manage.
At 22 years old, I’ve consumed about 4 gallons of Golytely in my lifetime. I’ve also documented my progress through it in every colonoscopy prep I’ve had. Why? Because it’s horrifying. It’s awful. It’s embarrassing. I need someone to laugh with me about it. The adult wards in hospitals are often neglected by volunteers or celebrities, so I have to make do with what I have.
JJ Watt isn’t going to be showing up in any hospital room of mine, that’s for sure.
I’m not here to ask for your silver linings. I’m here to tell you about invisible illnesses and what they do to a person even though you can’t see. Everything that happens to me could very well be the plot of a body horror novel. My immune system is literally eating my insides. That is a terrifying concept to a healthy person.
I completely understand that people mean well, but please step back and think about what you’re saying. “Get well soon” is a frustrating phrase when you have an illness with no known cure. I’m not going to get well soon. I also understand if you can only sympathize with my situation, but please don’t invalidate what I’m going through by pointing out something else.
Things you can say to a hurting friend instead of starting off a sentence with “at least”:
- That really sucks, I’m sorry.
- Do you want to just vent? I’ll listen.
- What kind of ice cream do you want me to bring you?
- Do you need any help around the house?
- Do you need me to take notes in class for you today?
- What’s your pain level today? Do you need your pain medicine?
- Have you taken your medication yet today?
- How many spoons do you have left?
- I’ll be there for you.
- I don’t even know what to say right now. I’m just so glad you told me.
- All nine seasons of The Office are on Netflix.