This is such an amazing piece! Thank you for articulating so well many of the thoughts and feelings I have regarding my Sjogren's diagnosis, especially in terms of not wanting to be identified as the "RA" girl. I loved that.
You have such a strong spirit and I am glad you have brought that spirit to your writing!
Christine
Hi
It is a wonderful piece the way you equated RA to our life partner.
The thoughts you penned down is so true. Blinded by the pain and disability that RA inflicts on us, it leaves us selfish in some way. Our pain makes others pain invisible.
I have a very understanding husband without whose support these ten years with RA could have been totally crippling. The fact that I am still a full time research scientist is because of his support. Many times when I am in a terrible flare he seemed to lack that sensitive touch. It is only later, when pain did not blind my brain, did I realize that he too was going through a very bad phase in his work. Even then he was trying to be as caring which in my blinding pain was not enough. Selfish huh!!!!!!
Now I may be in great pain but I do not let that blind me to others pain and misery. That I think is another milestone in my war against RA.
So keep smiling and keep trying
Ratnapriya
I use a similar example when I am trying to explain how much time and energy Lupus and RA require of me. I don't think anyone understand what anyone else is going through. To the teenager and her first breakup there isn't anything worse. To a man losing a job he can't imagine physical pain being worse. And so on....
But as individuals we all have to learn to deal with what we are handed as best as we can, stop when we can't go forward, and ask for help when we need it. I don't even try to get people to understand I just simply state, "I can't do such and such I don't have the energy, strength or time." I have learned to be very selfish at times, in fact this was the hardest lesson to learn but the one that has had the most rewards.
Ellen,
When I read your words I never thought of "selfish". Instead I thought, "This gal knows what she needs to do for her own body." I think sometimes when we deal with RA we feel selfish when we set our own limits but I don't think we are at all. We are listening to our bodies. They are smart and know what we need. The problem comes when we don't listen and try to do too much.
Also, I like that you ask for help. This was by far my m most difficult challenge in dealing with RA but also the most beneficial and provided the most personal growth.
Cathy
Ellen,
When I read your words I never thought of "selfish". Instead I thought, "This gal knows what she needs to do for her own body." I think sometimes when we deal with RA we feel selfish when we set our own limits but I don't think we are at all. We are listening to our bodies. They are smart and know what we need. The problem comes when we don't listen and try to do too much.
Also, I like that you ask for help. This was by far my m most difficult challenge in dealing with RA but also the most beneficial and provided the most personal growth.
Cathy
Barbara,
Thanks so much for sharing. Life can definitely be a challenge for those living with us, can't it? I often feel really bad for them. Our disease makes no sense to them or us. You did good in listening to your body and napping. Our bodies are smart when we listen.
Good luck to you and your partner. I hope counseling is good for both of you!
Cathy
Cathy, I have to say that I think this was the wisest and most courageous post I've read yet about RA. You wove such profound truth into your words that I ended the post nodding my head in agreement. Thank you for writing it. I have absolutely no doubt that it will be of profound help to anyone who reads it--especially those who are new to the disease and learning for the first time how to cope with it. Incredible. Thank you again. :D
HI MY NAME IS GREG DORSEY. MY MOM IS 78 YEARS OLD AND SHE BEEN DEALING WITH RA FOR SOME TIME NOW AND JUST GOT OUT THE HOSPITAL. WHAT EXERCISE DO YOU RECOMMEND I HELP HER WITH AS FAR AS HER HANDS AND BACK. IT SEEM THAT HER CONDITION IS NOT GETTING BETTER, BECAUSE SHE CANT STAND STRAIGHT UP AND HER JOINTS IN HER HANDS LOOK SWOLLOWING. IM READIND UP ON THIS BUT I CAN REALLY USE YOUR HELP. YOU CAN ALSO REACH ME AT chefgreg357@clear.net. THANK YOU AND HOPE YOU FEEL BETTER SOON.
Cathy, we all have good and bad relationships with people and other things. Some are nasty like arthritis pain but others are beautiful like the perfection of a leaf on a tree. The point is that we need to realize that we are not alone in any type of bad relationship and that we need to focus more on all the good ones around us. Your article made me realize a few things! Thanks!!
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I love the way you likened living with RA to be a relationship. It really is - you have a life partner (parasite?) Who will be part of every day of your life, more so than your spouse, your kids or anyone else. Figuring out how to live with this often cantankerous partner is essential. you made some excellent points about what happens when things are hard with the people in your life. When you're in a bad relationship, you get tunnel vision. Once you get out of it, you are able to look outside yourself and help others. That works whether your relationship is with a person or with your disease.
Knowing that you have gone from being in a bad relationship to having a good one is important for others to know - it gives hope. Knowing that part of that transition was due to things you can control, such as diet, stress reduction, etc., is also really helpful. Thank you.
It's funny Lene because even though RA has been good to me this year I find that I still make time for it. To be honest, some of the lessons learned from RA make life outside of RA better. Learning to say "no", to take time to sleep, knowing my physical and mental limits and actually listening to my body, eating well, etc has helped make every aspect of my life more enjoyable.