Rheumatoid arthritis has been a teacher. Not my favorite way to learn, I’ll admit. But I have learned a lot.
I, like many it seems, used to be a Type A, in charge, get 25 hours out of every, day kind of person. I had a good career, two children, one of whom has an autism spectrum disorder. And I thought I was a pretty good wife. I cooked and cleaned and generally took care of stuff. I helped out at the school, I made time to listen to my friends troubles, and I was happy to help.
Lots of people treated me that way…with disgust. Disdain. Disbelief.
They thought I was making up the degree of pain I was in. The severity of the disease. Very few bothered to educate themselves. They didn’t care enough.
That’s people. They have their own problems.
For me, my whole life changed. Much as I didn’t want it to, rheumatoid arthritis occupied center stage. It controlled me. So I had to learn to adapt. I learned a few other things too:
- I am very, very strong.
- I don’t sweat the small stuff.
- A smile helps. Mine or someone else’s.
- I need to be realistic. Wishing things were different doesn’t help. It just saps my energy. So I work with what I’ve got, and make the best of it.
- Worrying about things I can’t change will only bring me down. I will change what can be changed, and I have to accept the rest. I have to make the best of what I have.
- I am luckier than many, many other people.
- I need to prioritize. I have to choose what’s important in every day. I make mental lists…What MUST be done. What it would be great if I could get done. And what is just going to have to damn well wait until tomorrow.
- What other people think doesn’t matter. This one was huge for me, but there is no changing other people’s opinions. Some will always think I am a malingerer. Some will never understand. Some will always make nasty remarks. Some will always tell me their pain is worse than mine.
- Just because someone has the same diagnosis as you, doesn’t mean you will have ANYTHING in common. Not even your disease. RA and inflammatory arthritis is so variable. Some people are affected severely, some mildly.
- There is no one RIGHT way to manage your disease. There are as many ways to manage Rheumatoid Arthritis as there are people with rheumatoid arthritis. I only know the right way to manage my disease, and I make the best choices for myself.
- Pain and happiness are NOT mutually exclusive. I have to try and do the things that I enjoy. There are some things that are now impossible. Others that I can still do, but not without pain. Others that I can do on some days, but not others. I can still enjoy these things. In fact it’s very, very important to keep doing the things that make me happy, even if I can’t do them the same way I used to.
- I can’t do it all myself anymore, or at least not all in one day.
- How to ask for help. No wait, I’m still struggling with this…
- Who my friends are. My real friends. My real friends understand my limitations. And they still want to spend time with me. And not just when I am ‘well’. The people that make me feel guilty for cancelling at the last minute, or saying no to an invitation, or not participating in their sky diving or camping adventure are NOT friends.
- I can do most things that healthy people can do. But it will take me a lot longer, and it will almost certainly hurt me a lot more.
- Doctors don’t know everything. They are not gods. They cannot fix every problem. They can offer options. Give informed opinions. I make the final decisions.
- The responsibility for my health is mine. For me that means eating well, exercising when I can and taking my medications as prescribed.
- Accepting my limitations does NOT mean I am giving up.
- I still have a lot to offer. I am still capable of a lot of good.
- Did I mention I am very, very strong?