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Saturday, 3 August 2013

Illness Intrusiveness

Rheumatoid Arthritis is an intrusive illness that affects every area of your life.

There is a scale to measure just how much of an effect a chronic disease like RA can have. It's called the Devins Illness Intrusiveness Scale. As Dr. Arthur Bookman pointed out in his keynote presentation at the Sjogren's National Conference this year, Sjogren's Syndrome and Multiple Sclerosis are similarly intrusive.  I think RA also would rank up there with those illnesses but though I went through the questionnaire I am not sure exactly how to score the results.



                        Dr Bookman at the round table discussion. Sjogren's Conference 2013

Often all of your identities are affected, some more than others.

Spouse/Social being

Homemaker
Parent
Worker

As you go through the stages of RA some areas may take a smaller role, like work. Once you retire, if you get so far, work will become less relevant.  Of course your kids will mature and may make you a grandparent. Some of them will have learned to have a lot more empathy than their peers.

That still leaves you with making a home for yourself and your spouse if you have one, and all of the social interactions that are so necessary to keep you supported and healthy. Social networks are a strong predictor of longevity and good health.


I remember when my RA was out of control. I was so worried about being bumped or jarred because of the pain in my hands and feet that I formed a little wall down the center of the bed for protection.  Now that things are under better control I look at that as overkill thank goodness.


                        There's a wall between us          A.McKinnon

I'm sure it will leave you completely unsurprised to hear there are also fatigue scales. I read about one fascinating one today on Julia's Reasonably Well blog. It is always interesting to see where you fit when you look at them.


There's another one called the Medical Outcome Study Short Form 36 (SF-36) that is mentioned in this article about the way that fatigue affects quality of life in rheumatoid arthritis compared to fibromyalgia.





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