Rheumatoid Arthritis and self esteem
The worst thing about rheumatoid arthritis, or any of the inflammatory arthritides, is the pain. The fatigue is often a close second. And you would expect that the third worst thing would be one of the myriad of other symptoms, or even the scary drugs and side effects that we have to risk.
For me it wasn’t that. It was the attitude of the people around me.
When you get diagnosed with a serious disease you don’t expect to be laughed at…ridiculed. You don’t expect to be belittled or denied. You expect support. Especially in the beginning, you are scared, confused, worried about what this means for your future, your career, your family. You need support as you work through all of this. You need to talk and you need people to listen.
But I learned very quickly that although everyone had an opinion, very few people cared.
There is a vast difference in RA symptoms, and I think that’s part of why people can be so cruel. Everyone seems to know someone who has ‘RA’, who does rock climbing, works an 80 hour week as a paramedic or a bricklayer and does volunteer work, or crochets teddy bears for sick children in their spare time.
So everyone with RA should be able to do that, right?
Wrong. There is a HUGE variation in symptoms and severity in Rheumatoid Arthritis. Some people do just have some mild aches and pains. Some people have one or two joints affected, that flare every so often. And some people deal with crushing, soul destroying pain in multiple joints, that not even morphine will alleviate, every single day of their lives. Mild rheumatoid arthritis bears no resemblance to severe Rheumatoid Arthritis. It’s a continuum, and everyone sits somewhere on it.
Comparison is pointless, and downright hurtful.
And still, people tell you that ‘rheumatoid arthritis is not a serious disease’ (from a friend who is a podiatrist). ‘Rheumatoid arthritis is nothing dramatic’. (From another friend). ‘Diabetes is much worse than rheumatoid arthritis…diabetes affects every aspect of your life’(Another friend. Since when did having a disease become a competitive sport?). And the ever popular ‘It’s a shame you have such a low pain tolerance.’
These are all things people have actually said to me. There are many, more. Some I wouldn’t repeat.
When people continually tell you these things, you start to wonder. “Am I just a big sook? Do I have a low pain tolerance?” You start to question yourself. Deeply.
I have decided that I have a high physical pain tolerance. But I have a very low emotional pain tolerance. Those people really upset me. Their attitudes and lack of understanding hurt me. Badly. Their expectation that I should continue on as normal, without missing a beat, when I was dealing with a life altering diagnosis was abhorrent.
Finally I realized that they just didn’t care. They didn’t care about ME, had never cared about ME, they cared about the things that I did for them. That I listened to their troubles and gave them support. That I helped them out by looking after their kids, and fetched and carried, smiled and nodded and played rent-a-crowd at their parties. They just wanted me to keep being the person I had always been, who did stuff for them.
It wasn’t my physical pain tolerance that was the problem. It was my emotional pain tolerance. I cared far too much about what other people thought. I was an emotional push over. I was easily manipulated. I was easily bullied. I was scared and alone and I needed the people I had supported for years to now show me some support. They showed me the opposite.
So I stopped.
Stopped explaining. Stopped trying to please them. Stopped seeing them altogether. It took time, but I stopped caring about them, and their vapid, hurtful words.
So a gift rheumatoid arthritis has ever so gently bestowed upon me, is the self-esteem to not care what other people think about me.
With the exception of my kids. I DO care about what they think. I DO care about how my capabilities (or lack of) affect them. Because I know they miss out on a lot of things because I can’t physically do them. Or I can’t afford them.
This week has been rough. My whole right arm, (fingers, wrist, elbow and shoulder) has been inflamed. I haven’t done any drawing or sketching. But my daughter has. And this is what she drew for me.
In case you can’t read it, she has written “You are my Badass Mum and I love you sooooo much! You are the best Mum in the world!”
I think I’m doing OK.