Earlier in the week, I was pleasantly surprised to find a link to the new edition of iPain Living, the magazine of the International Pain Foundation. My article, “The Great Thrivival” is in it!
Back in 2004, I had an article published in a professional nursing journal. It was about caring for patients with lupus, from the perspective of a nurse with the same disease. I was back at work, in a job that I loved. And six years into the diagnosis that I thought would break me! Little did I know that far worse was on its way. That experience was exciting and nerve wracking. Having an actual editor, especially one working for a scientific, professional magazine was no picnic. It forced me to stay on task, keep moving and ultimately get the job done. Sometimes I wish I had one for this page! Time does get away from me.
Anyway, writing the article, recommending proper care techniques for others with the disease, was important to me. It was one thing to provide care for a patient. It’s another to share the same diagnosis.
Eventually, I spoke with my editor about my RSD diagnosis. There wasn’t a lot of information about it. It was mysterious and frightening. She asked me to write about being a nurse newly diagnosed with a rare illness. I have no idea why I agreed. I didn’t want to talk about RSD, let alone write a feature about having it. That should have been my out, but I didn’t say anything until much later.
After stalling for months, I realized I was too close to the situation, if that makes sense. It was a raw wound that I wasn’t used to having, one that made me feel terrified for the future. My daughter had just turned three. We were a young family, trying to cope with another medical crisis. This one was far worse than the lupus. It involved surgeries, new meds, and ultimately losing my nursing career. Now out of work and in tremendous pain, I resented everything about it, became depressed, put the article away.
Finally, needing to face facts, I explained my inability to write anything about having RSD. Being unsure of the future was incapacitating, especially since the pain was so intense. The “me” that people see now is not at all the “me” of thirteen years ago. Not by a long shot. I was barely walking, struggling to put my foot on the ground. The podiatrist who dumped me on his colleague didn’t believe my pain was as bad as I reported. The doctor who diagnosed me probably saved my foot. I was one giant raw nerve. Bitter and devastated, nothing I wrote back then would have been appropriate. So I released myself from writing the article. I figured that I’d write it….. eventually. It simply wasn’t the right time.
After a ton of encouragement from my husband, I started this page in 2009. I wasn’t writing consistently, it still felt wrong to me. But, ultimately, blogging about having RSD would help me overcome a lot. It would help me come to terms with being a chronically ill person. Help me manage life with multiple diagnoses. And that’s not an easy task. It took years to regain pieces of myself. I’m still discovering things about “me,” circa now.
There’s tremendous validation in telling your story. We can all relate. Exchanging information about this oddest of diagnoses – even the smallest details – bonds us. Discovering a network of RSD warriors, I found a safe place to vent. And the support to truly live life to the best of my abilities.
Now, I’m willing to tell my RSD story, especially if it benefits others. I’d like to think that my experience encourages others to share theirs, to not feel isolated. And that makes it worth every word.
Peace and painlessness,