I just received this comment on an older post, and think that it deserves more visibility – so, I am posting it here to my front page.
Thank you, Janet. Very well said.
In 2001 I was diagnosed with Chronic Regional Pain Syndrom(CRPS), and two years later I was diagnosed with Rheumatoid Arthritis(RA). Since then I have had many up and downs, surgeries, physical and psychological therapy, medication treatments, and still I don’t always feel that people understand what I am going through.
One day when I was down I wrote the following note and sent it to all my friends and family. I think it helped them understand that even though I may look OK that putting up that front helps me to take my mind off of the pain. I don’t want people to feel sorry for me I just want them to understand that there are days that I can’t be counted on to be my best.
Having a disability doesn’t make you disabled and although I can’t be as active as I used to be, (I always played sports) I always try to do what I still can.
One important thing I have learned is not to judge people by the way the look. I used to complain about people who have handicapped plates when they didn’t look disabled. Now I understand. So here are my thoughts on the “Debilitating Pain of RA”.
Debilitating Pain of RA
Many people don’t realize that we, the people living with Rheumatoid Arthritis(RA), don’t have to be in a wheelchair or use a walker to be disabled, the pain of RA does make you disabled whether it’s physically or emotionally. I realized this one week when my Remicade treatment had diminished from my system and the pain from RA ravaged my body.
I never knew what pain was, I mean real pain. Pain that makes you walk like you’re 100yrs. old, pain that attacks all your joints at once and makes you want to say “I can’t take this anymore!”.
I thought the pain I went through with CRPS was the worst pain I could ever have,(and I guess at the time it was) but that was just one knee, the RA pain went right through many joints in my body.
One day it attacks the knees, then it attacks the shoulders, the wrists, elbows and hands, next the feet, ankles and any joint that is vulnerable.
How can anyone say a person with RA is not disabled? Is it because you can’t see my disability? Or maybe my pain?
The day comes for the treatment and yes it does help the pain go away, but not away completely, it’s still there lying in wait until the medication diminishes from my body, then again pain will rear it’s ugly head then I will be in pain again.
Janet Richards 2008