Yikes! I apologize for my big gap in posts here; I’ve been caught up in working a lot lately and my little blog has fallen by the wayside in the past month. I vow to be much better moving forward! Anyway!
You can have a conversation with just about every individual that suffers from chronic diseases and they will have experienced the same interactions about said disease with those around them. I’ve talked a lot before about how it’s a balancing act to ‘manage’ the different relationships in your life when you have chronic and autoimmune diseases. Those closest to you tend to be somewhat understanding and helpful. Even others are sympathetic and show concern. But when you throw the word chronic into the situation, our brains have a hard time fathoming the gravity of that. Humans are meant to understand an acute ‘problem’ and then see the solution or cure, and then we move on. Well, that’s impossible with autoimmune diseases as there is no cure.
Here are some of the most frustrating, yet also funny (funny ridiculous, not funny haha) comments chronic and autoimmune disease fighters deal with.
- “Wait, you’re still sick?!”
- “You’re sick again, weren’t you just sick a few weeks or month ago?”
- “You should stay positive! You can get better that way.”
- “Have you tried ___? My coworker’s friend’s brother’s girlfriend’s mom did and she was cured!”
- “If you cut out ___ you wouldn’t be sick anymore.”
- And on and on…
It’s a double-edged sword for me. On one hand, it’s so frustrating and ignorant. But on the other hand, invisible illnesses are just that: invisible. So I understand why people have a hard time. It’s true that unless you have these diseases, you really can’t understand 100%. So I have to give people a little slack. But there’s a fine line between supportive and trying to be a medical professional or somehow acting like there is some easy fix. I won’t get better. It’s called chronic for a reason.
Then we move on to the naysayers. They have a dotted line to the people described above, but they’re different. And worse. These are the people who don’t believe you. Who think you’re faking it. Who think you’re weak or can’t handle it. Or who think you’re a hypochondriac. These people can add rude, cold, brash, and unsympathetic to their resumes.
In fact, I actually have an ex-boyfriend who dumped me because he thought I faked passing out and a trip to the ER. That’s right, that was the reason he used. I did it to get attention and ‘test’ him. (Asshole)
Here’s the thing. This isn’t an easy life. These are not easy diseases. And when someone accuses us of faking or exaggerating or what have you, it’s the lowest blow you can give. It’s a straight shot to the heart and like you got the wind knocked out of you. Those are the people I wish I could switch places with for a week so that they can deal with my body and my immune system for a bit. They’d run screaming.
But. In the grand scheme of things, those people are not worth the little much-needed energy that I have. And I don’t have time to waste on them. No matter how soul crushing it is to have friends, or acquaintances, or coworkers, or loved ones, or what have you that act that way or live that sense of entitlement and ignorance.
One of my many goals as I battle chronic diseases is to raise awareness, lower the stigma, and form less ignorance around our struggles and illnesses. In doing so, I hope to become a voice and an outlet for other patients.
To do this, I’ve decided to do two things on a weekly basis. And I’ll be starting them sometime in July. I’ll be updating this site to include links to some live conversation over chronic diseases. I plan to use Meerkat to do a weekly live Q&A, and I plan to do a weekly tweet chat. Both will revolve around the idea of ‘My Invisible Life.’
So here’s my call out:
What kinds of themes and topics would you like to see discussed? What questions do you have? What experiences are you looking for?
Sound off in the comments below, or tweet at me (@kristinmcoppens)! I’m excited to start interacting with everyone more.