I cannot tell you how often people ask how I’m doing, how I’ve been or what it’s been like living with rheumatoid arthritis. There’s the unsolicited, well-meaning yet sometimes ignorant advice, and then there’s the never-ending “One day it’ll be OK. You’ll wake up and be better.”
So, this letter is to those people. The people who tell me if I pray, maybe my disorder will go away. To everyone who says if I got out more, became more active, lost weight, ate all organic, no wheat, no gluten — I’ll be “better.”
To all the people who believe what they’ve read on the internet about magical drinks, powders, ointments and mixtures that’ll make me better.
I will not get better.
I will live, and I will be OK. No, my hands are not contorted from my disorder, and no, that doesn’t mean my hands don’t hurt.
Yes, I can type — but that doesn’t mean I’m able to write with a pencil or pick things up with the very same hands that are incredibly able to type.
And yes, I did that amazing thing yesterday, last week or even the last time you saw me. Today, I can’t.
Yes, your loved one may have a condition, and she may do amazing things despite the pain. But my pain is different. My experience is different. You can put two people with identical symptoms and conditions side by side, and they can still tell you what they individually experience is different.
I want to inform you that despite it being a new year, I might not be so new. I will still be sick, and I will still have my good days, bad days, and somewhat OK days. No, rheumatoid arthritis will not go away despite all the praying, wishing and “miracle” fixes; I probably won’t be any different next year. We can hope, and we can dream and pray that it’ll be different.
But I want to ask you this new year, please change your outlook on my condition. Because just as you’re trying to lose weight, make more money or be a better person, I’m trying to leave my house more than once a week, take a shower every day and brush my teeth, do my hair and makeup and wear regular shoes that are not comfort wear shoes.
I wish to be a “normal” 23-year-old, so maybe while you’re trying to do all those things, make an effort to understand that I am trying to do things as well. However, repeatedly explaining to you that my disorder is incurable, just barely manageable, doesn’t make me feel like a normal 23-year-old.
So please, this new year, stop and think before you suggest something, give advice, or ask how I am. Because to be completely honest, you’ll probably know the answer the moment before you think to ask.
Image via Thinkstock.
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