There were some wonderful surprises at the American College of Rheumatology Scientific Session last month aka the ACR meeting. One of them was a poster presented by Dr. Vibeke Strand of Stanford. It’s not the topic that is wonderful, but the fact that rheumatologists are studying it. The study was called “The Impact of Rheumatoid Arthritis (RA) on Women: Focus on Pain, Productivity, and Relationships.”
Rheumatoid Arthritis pain has a tremendous impact on women
This huge study of women with Rheumatoid Arthritis from around the world confirmed that Rheumatoid Arthritis pain has a tremendous impact on women’s lives and that most of them live with a high degree of pain and difficulty. I know most of you know that already, but this is good news.
Look at the basis for the study: “It is widely recognized that daily life-burdens associated with RA, including functional impairment, pain, inability to participate in desired family, social and leisure activities and reduced productivity at work and within the home, have a profound impact on the overall health-related quality of life of RA patients. However, this impact on daily life in women, as well as on relationships and overall well-being, has not been well characterized.”
Think about this: even though a large percentage of women with Rheumatoid Arthritis who comment on the blog are bright, articulate, educated women, many of them thank us for this place where they feel understood. Why do they say things like, “I finally do not feel like I’m crazy”? Dr. Strand’s study gives us clues.
- 75% of respondents who were currently taking pain-relief medications, but…
- a high proportion (72%)still reported experiencing daily pain
- the majority of respondents (68%)felt they had to conceal pain
- 67% of respondents agreed that they constantly look for new ideas to address pain
- nearly 9 out of 10 mentioned pain in discussions with their physicians
- 26% felt isolated & 32% that RA had affected their closest relationships for the worse
- 4 of 10 single women agreed that RA makes it more challenging to find a partner
- 22% divorced/separated respondents indicated that RA had at least some role in their decision
There are other painful conditions, so why is Rheumatoid Arthritis different?
RA and other autoimmune arthritis diseases like RA are chronic, incurable, mostly invisible, and not well understood by science. Also, most patients tell me something that is easy for me to accept unfortunately: RA pain is really unexpectedly horrible. Strand’s study: Pain is a paramount issue for women with RA; the majority experience pain despite taking pain relief medication.
How do most people with RA manage this horrible chronic pain?
The study says the majority conceal it because they feel they need to do that. How often could you cry or scream, seriously? Tens of thousands of women in seven countries say they have this experience in common. It is contrary to what was presented by the Arthritis Foundation last year in one of the hypochondriasis articles, as well as certain other sources that hold to the archaic belief that RA pain is, in part, a kind of hysteria.
Could Dr. Strand’s presentation mean that we are the nearing of the end of that antiquated concept of RA pain?
There is hope that one day RA pain could be recognized for what it is. One precious lady with RA told me yesterday what her own rheumatologist said about people with RA. Copied from her email: “She said the RA patients are a special group of people. She said that many numbers of her patients are more accepting of their condition and try to keep moving and don’t complain a whole lot. She said she thought we had a better way of dealing with our problems, not whiners or hypochondriacs, but people work hard at being as normal as they can be. She is amazed.”
So am I.
Edit: Updated link to study, 3/17/2013.
- Cool-colored pics show some pain: The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
- The Lucy post: Rheumatoid Arthritis Disease May Be the Scarlet RA
- Video: Thoughts from American College of Rheumatology (ACR) 2010