I am so resentful of my condition that it has become self-loathing.
I would not say that I hate myself because I do not.
The arthritis is just a quality that I dislike about myself.
If there is a quality about myself I do not like, I can actively change it.
This is not the case with the RA.
And that is where that resentment comes from.
People who know about my condition sometimes treat it like a personality trait. One that I can turn on and off like a switch.
If I am able, nobody minds.
If I am disabled, it is my fault because I am not trying hard enough to fight it.
Auto-immunes do not work like that.
There are a handful of things (heck, I can probably count them on one hand) I know for certain flare me up. Bouldering (shorter climbs without ropes), for example, is one of them.
I make that perfectly clear.
However, people still assume I can do it. Or I can do it in the future if I work on it.
Overcoming RA is not like practicing a skill and getting better.
It is a barrier that I have to live with; with the understanding that I am incapable of certain activities.
But somehow, that is my fault.
I do not understand that rationalization.
How is this my fault?
This disease is not all in my mind.
What I begin to realize is people do not understand this. They assume I “cry wolf” because they cannot see the symptoms.
How I feel is based on my opinions alone.
Maybe when my joints start to deform people will finally realize that there is a lead-up. Joints do not just disfigure overnight.
That seems like a very, very dire price for me to pay so people believe me.
It would be easier to find new people to surround myself with. People who do not make me feel worse about myself. Unfortunately, I hit this block everywhere I go.
Even from my own family.
What I begin to realize is I am alone in this.
Nobody sees me during a bad flare. I hide away and cancel all plans.
Just because people see me during a controlled phase does not mean that I am always like that.
And what really gets me, if I do venture out when I am feeling unwell, people respond “You could have stayed home, we would have understood”.
What they understand is that I am making excuses and hiding behind my disease.
Anyone who knows me, please, list three times I used my disease as an excuse.
I dare you.
Just because there are people out there who have control over their auto-immunes does not mean I do. I am still new to this diagnosis. I know it will take time to stabilize.
I just wish other people knew that too.
Hi, my name is Monica and I have RA.
It’s been over a year since you wrote this post. Has your blog helped your family and friends understand you and your condition better? I hope so. I really relate to this post. During a flare someone once said to me, “What did you do this time?” It certainly did make me feel like it was my fault and that made me want to stay by myself. In addition, when you are in pain – the simplest things like concentrating on what someone else is saying can be difficult (fatigue, fog, brain-drain, etc.). I could go on and one. I’m trying to come to terms with my health issues and accept that certain people in my life will never understand. And that’s really tough. We all want to be understood, right?
I have a lot more understanding from my family than anyone else. I realized the main thing is family sees me in whichever state I’m in while “friends” only see me when I am well enough to go out…so they still don’t understand when I am unwell. I recently starting cutting more people out of my life just because I already expend a lot more energy just to be functional, I do not have any extra to deal with obnoxious people who don’t want to see deeper than what is in front of their face!