When RA is All Too Visible

I often read about RA and other autoimmune diseases referred to as “invisible diseases,” which they are for many. Many articles relate the difficulties such invisibility creates for those inflicted in terms of lack of understanding and compassion. I understand and empathize. Pain is silent and shows no outward indications. Been there, and know that!

Sometimes, however, RA creates all too visible crippling deformities. My hands are a textbook example of the crippling caused by RA. I have ulnar drift also known as ulnar deviation and subluxation of all MP finger joints. See photos of 55-year-old female’s hands at this website.

Other photos are RA hand deformities can be seen here:

For most people with RA today the good news is a host of new treatments: biologics, DMARDS and TNF-Alpha Inhibitors and now JAK inhibitors. Good news for those who can tolerate these drugs and for whom they work. These treatments stop the progression of the disease and can put some in remission.

That wasn’t always the case. I was diagnosed with RA in the 1980s. There was no known cause – and still isn’t - and treatments were basically guesswork. I have been prescribed gold injections and multiple anti-inflammatories including: Ecotrin, Mortin, Naprosyn, Clinoril, Feldine, Auranofin (Ridura), Depen, Relafin & Azulfidine, Actonel, Arava, Penicillamines, Oruvail (2001), Methotrexate (oral), Voltaren, Plaquenil, Arava, Aureate, Cortisone injections, Cortisone Medpak, Imuran, Oruvail, Bextra, Kineret, Enbrel, Humira, Methotrexate injections, and currently Orencia. It was mostly trial and error. I was a human Guinea pig.

In addition, I have had multiple surgeries called synovectomies to remove the thickened synovial fluid in the hopes of preventing the joint deformities I wound up with anyway. I had bone spurs and rheumatoid nodules removed surgically. I have had ruptured tendon repairs and a total knee replacement.
Despite all of these medications and surgeries my hands are horribly disfigured and deformed. I have photos and videos.

People unintentionally do and say hurtful things. My deformities cause me pain when people grasp my hands too hard to shake. They cause me great functional difficulty, range-of-motion difficulty, in addition to embarrassment and humiliation. I often think about the episode of the Seinfeld show in which he rejected the idea of dating woman he described as having “man hands.” I was once asked why I don’t wear gloves to hide them!

The tendons in my elbows have contacted causing shortening of my arms making me feel that I look like T-Rex!

My RA is all too visible.