How to Help a Chronically Ill Friend, Even When They Say, 'I'm Fine'
When I tell someone for the first time I have Crohn’s disease, the default response is: “Oh! Yeah, I have a cousin/friend/uncle/acquaintance with Crohn’s! They’re doing great. Don’t worry, it gets better!”
This will often be accompanied by a pat on the shoulder, with a “you’re doing great” kind of sentiment.
The problem is, of course that person thinks they’re doing great. Chronically ill people are practically pros at hiding their symptoms, pretending everything is good and going to work/school/running errands without blinking an eye, even though they might be experiencing gut-wrenching pain.
Usually I smile and say “thank you!” to the person telling me something like this. It’s the easier route. I’m already tired from my chronic pain and fatigue – I need to save my energy for something else, like going to the grocery store, walking to class or reading a book.
Here’s what I wish I could say to this hypothetical person:
“You don’t know if they’re doing great because chronically ill people are basically trained to hide their symptoms from you. You don’t know that your cousin/friend/uncle/acquaintance was up all last night because their medication was causing extreme nausea and vomiting. You don’t know that they weren’t doubled over in pain when they woke up a few weeks ago before they looked at themselves in the mirror, told themselves to get it together and went to work. You don’t know that they question themselves, their doctors, their loved ones and everyone around them because they don’t know who to trust anymore, since the medical field has helped them but also hurt them. You don’t know about the days they spend in the hospital, dazed and sleepy from Benadryl to prevent an allergic reaction, as iron drips from an IV bag into their veins, causing bruising, pain and stiffness. You don’t know about the days they cry into their pillow when they wake up because they don’t know if they can go on. You ask them how they are and they say they’re doing well because they are too tired to tell you the truth.”
How do I know this? It’s because I’ve experienced all the situations listed above. It’s because I have gone to class right after a painful infusion, taken notes in lecture while fighting my nausea, injected myself with my medications and then stood up like nothing was wrong.
This isn’t meant to be an angry message. I’m not trying to attack these people – it’s not their fault! It’s hard to know this if you’re not actually chronically ill or extremely close with someone who is chronically ill. It’s simply me pointing out that chronically ill people are so tired of explaining their health situation to so many people – doctors, nurses, family members – that they simply don’t have the time or energy to tell this hypothetical person how they really are doing.
It’s easier to say, “I’m doing well!” rather than “I threw up this morning, I’m fighting to stay standing and I don’t know if I’ll make it through the day.”
It’s the easy way, and I don’t blame any chronically ill person for taking the easy route. We go through so much already. But we need to spread this message for those who are not chronically ill:
Just because I say I’m fine does not mean I am fine. Remember: I’m sick for the rest of my life. Instead of assuming your friend/cousin/aunt/acquaintance is fine when they say they are, just remember: we’re sick for the rest of our lives.
So the next time you (“you” meaning a person without a chronic illness) ask a chronically ill person how they’re doing, think twice when they say they’re fine. Maybe don’t even ask how they’re doing! Maybe just give them a hug, or bring them some food – even if they don’t ask for it! Sometimes, chronically ill people are burning inside but look like they’re absolutely fine on the outside. But a simple gesture like a hug, a small gift or making their favorite cookies will let them know you’re there for them – even though you might not understand their pain, you are willing to listen and willing to understand that they’re not always as “fine” as you think they may be.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo via DjelicS.