I'm Over It - Coping with RA when You Really Don't Want to
Last updated: May 2022
I have lived with symptoms of rheumatoid arthritis (RA) since I was a child. Since before I went through puberty. Since the days of adolescent activities, “easy, normal lives,” and so much more.
From misdiagnosis to RA management
My agonizing joint pain and swelling were misdiagnosed for years - written off as growing pains, dismissed and diminished as something not out of the scope of normal for a young active female and, as such, not properly treated for two decades.
There's always something
Today, I am 35 years old. I have been on medication for RA for 5 years.
Many days, I manage my RA without much struggle.
Every day, I am grateful for the infusion medication I receive every 5 weeks, which keeps my symptoms mostly at bay, and keeps me mostly functioning.
I say mostly because there’s always... something.
Difficulty escaping RA pain
Last night my knees hurt so bad, I found myself in tears. I was laying on the couch, using my TENS unit and my heating pad. I had tried the pain creams in my arsenal and nothing was working.
I remembered back to the many nights of my childhood, adolescence, and early adulthood that felt this same way. Why can't I escape this pain? Why does nothing really make it go away forever?
I woke up to a different struggle
This morning, I woke up struggling with something else.
I sat down to work at my computer and was off-put by the significant tingling and numbness in my dominant hand.
This is due to an RA complication called carpal tunnel syndrome and requires an additional set of braces, tools, and even medical care to manage.
These issues plague me
These instances aren't abnormal for me. They aren't even irregular. They're something I manage more often than I'd like.
Anywhere from a few times a week to a few times a month, these issues plague me, stop me dead in my tracks, and make me wonder how different things would be if I didn't experience them.
Today, I'm over managing RA
Today, it all just feels like too much.
Today, I’m over it. Like, immensely over it. I'm over living with rheumatoid arthritis.
I don’t remember ever having a day that I haven’t had to think about my RA. That makes me sad. So, so sad. And to be honest, kind of angry too.
RA is an autoimmune condition that currently has no cure. Today, I have to believe that I will need to cope with RA for the rest of my life. And that, friends, is an extremely overwhelming thought.
Wanting to run away from my body
But, here we are. I've felt this before - this feeling of being over it, of wanting to run away from my body, of wanting to delete my rheumatologist from my phone book and go on with my life as a "normal" well-feeling person. And, every time, I've found a way to make the feeling pass.
I'm pretty sure this is because I don't really have another choice. But I like to believe that I've also developed some skills to cope with and manage these feelings.
Self-care living with a chronic condition
In case you find yourself on a day like mine today, I wanted to share my thoughts with you.
Feeling "over it" may be part of your story. I know it's part of mine. And I've learned that trying to suppress those feelings doesn't make them go away.
In fact, it makes it harder for me to return to baseline. It makes it more difficult for me to advocate for myself as an RA patient.
Give yourself permission to feel
Try to give yourself grace. Living with an autoimmune disease makes you a superhero. Adaptability is your superpower.
So, if today feels full of rage and anger and frustration - feel it. Yell. Listen to loud music. Watch the movie that makes you cry. Call a friend and vent. Journal. Put all of your feelings out into the universe.
They're valid. It's ok to feel them, and then let them go. You're not alone.
Have you struggled to afford your RA medications?