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“When you have an invisible illness it’s hard to explain to someone who doesn’t have a clue. It’s a daily struggle being in pain or feeling sick on the inside when you look fine on the outside.” ~ Unknown
Have you heard of…?
Have you tried…?
My cousin’s husband’s brother’s mother cured herself by doing (insert thing).
Stop trying to cure us.
One of the things people with an invisible illness or chronic pain hate is people constantly trying to fix us.
So, here it is: we live with this life every day. We have researched, we have seen doctors, we have tried it. Your magical drink is not going to cure me.
I live every day with endometriosis, celiac disease, Graves’ disease, hypothyroidism, fibromyalgia, osteoarthritis, and a heart condition. As an individual who suffers from invisible illness and chronic pain, I do everything in my power daily to keep it under control. I have done so much research on my conditions that sometimes I find myself teaching the doctors.
We talk about our condition not because we want a cure, and definitely not because we want you to tell us how sorry you are or how much it must suck.
See the thing is this: it is a part of who we are—right up there with being a mom, being a yoga instructor, among other things. It is a part of us and it comes up.
What we need is understanding. Understanding that we might cancel plans more than most people (but that doesn’t mean we don’t want to be invited), we may engage in a slower, quieter fashion (social gatherings take a lot out of us), we may not be able to fully participate (that doesn’t mean you need to accommodate us), and some days are better than others (that doesn’t mean we are cured or have been faking it).
“The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are.” ~ Unknown
We are used to making situations work for us the best way they can; remarks about “oh we can’t do that if you are coming,” or “we can’t eat here” only make us feel horrible. No, I can’t eat at such and such restaurants but I didn’t agree to come for the food; I wanted the company and conversation.
Is it nice when plans are accommodated so that we can fully participate? Of course, but not when it comes with the backhanded comments. “Oh this food doesn’t taste that bad,” and “Wow it must suck to do this all the time,” and the list goes on and on. Do you think we don’t know how much it sucks? Hello, we live this life every day!
With each diagnosis and with each change I made to my life to make it more comfortable, I have lost friends. I became too hard to be friends with and that’s okay, I get it. But, if you want to stay friends, all we need is understanding and a listening ear when things are really bad.
We don’t want to feel like a burden to anyone and we definitely don’t need you to fix us. Living day-to-day in this way is hard enough. Our friendships shouldn’t have to be, too.
“The best gift you can ever give to a chronically ill person is your unconditional love and support.” ~ Lucjan