“I have cystic fibrosis, diabetes, epilepsy, and bipolar disorder.” I repeat this on a regular basis at doctor’s appointments, answering questionnaires, and making jokes about why I have no short-term memory and seem to cough like somebody started to perform an exorcism on me and forgot to finish the job.
When people find out about any of the four illnesses, they inevitably have a comment or a question – and they’re not always the best things to say to someone who is chronically ill. So, if you find yourself in a situation where somebody discloses a diagnosis to you, try to avoid the following clichés.
1. You don’t look sick.
While I’m sure you mean this as a compliment, what you’re really doing is invalidating the fact that I am sick. I know you can’t see the seizure activity in my brain, or my heavily inflamed lungs, or my pancreas failing to dole out insulin. But all of these things are happening because I’m sick. Instead, ask me how I’m feeling. If this is your first time hearing of my illness(es), ask questions. But please don’t doubt me when I say this sucks.
2. Can you eat that?
Yes. Thank you for questioning whether or not I’m taking care of my health and making me out to be irresponsible.
3. What are you going to do when you’re in the real world?
Figure out a way to fit my treatments in, take my meds on time, and get enough sleep…? My health will always be my priority – otherwise I won’t be able to do anything in the “real world.” (What does that even mean?)
4. I wish I could sleep in like you do!
I will admit, it’s nice to be forbidden from taking early-morning classes and encouraged to take naps, but I don’t get this “perk” just because – if I don’t sleep enough, I’m susceptible to having seizures or bipolar mood swings. And nobody wants to deal with that.
5. That’s a made-up illness. It’s probably just because you’re not getting enough sleep/eating right/stressed.
You’re partially right – sometimes I face exacerbations when I’m spreading myself too thin. But my illnesses will not suddenly go away because I got 10 hours of sleep last night. I still need to take my medication, do my treatments, and so on. Don’t invalidate me – I can show you proof of my illness if you ask for it.
6. You’re so strong and brave — I could never do it.
To be honest, this makes it sound like you’d rather die/not be born than have my condition, which sucks because I didn’t choose to have it. So here’s what I have to say to that: it’s hard being me, but someone’s gotta do it.
7. Don’t take antibiotics! They don’t work, it’s just the placebo effect.
I’m going to go out on a limb here and guess that you’ve never taken antibiotics. Because if you had, you’d know that shit is magical. Do you know how it feels to go from coughing a lung up to occasionally clearing a tickle in your throat? No? Let me tell you: it’s friggin’ AMAZING. So don’t try to get in between me and my drugs.
8. Try this alternative medicine! It cured my uncle’s-best-friend’s-aunt’s-brother.
Tempting, but I’m going to follow my doctor’s orders on which medications to take so they don’t interact horribly and leave me even more sick than before.
9. None of us know when we’re going to die – I could be hit by a bus tomorrow.
My mother told me a story regarding somebody who said this to her, and I shall pass it on. Soon after I was diagnosed with cystic fibrosis, my mother shared the news with someone. I was only five months old, and at the time, the life expectancy for CF was less than 30 – terrifying to hear after you’ve just had your child. In response, this person said, “well, any of us could be hit by a bus tomorrow.” My mother stared at him and said, “yes, that’s true, but in my daughter’s case it’s as if all the buses are aimed at her.”
I know death isn’t fun to think about. Trust me – facing my own mortality has been difficult, and I still have bad days when I let it weigh me down. So read up on my illness. Ask me questions. Become educated so I can lean on you should something happen. I will be forever grateful.
10. I’m so sorry.
This one isn’t actually as bad as the others, and it might feel like a natural response. The problem with this one is that there’s nothing I can say. “It’s fine?” “I appreciate that?” “It’s not your fault?” “Yeah, it’s pretty shitty?” None of those feel like appropriate answers. I know you mean well, so tack on an “can I help in any way?” or ask questions.
11. You’re being too negative. Look on the bright side – you’re alive!
I don’t even have a response to this. Never, EVER, under ANY circumstances, say this to someone with a chronic illness. NEVER. Am I grateful that I’m alive? YES! Am I being negative when I talk about how my illness is progressive and scary? NO. I’m being a human with a chronic illness. Please, just listen and love me.
12. Don’t die on me!
I have actually had somebody say this to me, and it was the worst. If you say this, I end up comforting you about my condition. Please don’t place your fear on me in such a way that I end up having to be strong for you. I’m just as scared as (if not more than) you are.
13. Everything happens for a reason!
No. Don’t. Nope the fuck outta this one if you hear yourself starting to say it. Abort that mission and just stop.
I don’t mean to sound harsh and mean, truly. But the ONLY reasons behind my illnesses are due to science and chance. And the kind of reason you are talking about does not exist. Nobody deserves to be chronically ill. There is no good reason why. And if you really, honestly believe there is… please refrain from telling me and just be a kind and supportive friend.
Nobody is perfect, and if you have said any of the previous sentiments, don’t worry too much about it – we know that not everybody knows how to respond to news like ours. Just think twice, be kind, and avoid the aforementioned clichés. In the end, we’re people, not clinical diagnoses, and we’ll be glad to have met somebody who will support and love us regardless.