Many years ago, I had reconstructive knee surgery. I lived in Denver at the time (no it wasn’t a skiing accident but a feisty horse) and my mom and sister came to visit me for a few days post surgery. We went to a museum and since I was on crutches, I decided to use a wheel chair for the first time. It was long before I was diagnosed with CFS and fibromyaglia and my first experience as less abled than the general public.
My sister was my guide through the museum and every time we stopped to view a work of art, people would be careful of my extended leg, swaddled in padding and ace bandages, as they walked in front of me, blocking my view. My sister was furious and at times told people to show some consideration but I was more introspective. I felt invisible and my injury was simply a wall for the public to walk around. I was grateful that my situation was only temporary.
For years, even before the surgery, I had lost my energy, always felt kind of sick and very tired. After several years of thinking I was just getting old and it was all in my head (thanks docs!), I finally found a new doctor who immediately identified my health issues as fibromyalgia. I was referred to a rheumatologist specializing in CFS and fibromyalgia and after all the tests discounting other illnesses, I was ultimately diagnosed with both diseases. It has been more than 10 years since first being diagnosed and I have had periods of flare-ups, frustration with doctors (I moved away from my rheumatologist, and hero, several years ago), and tried to reason with employers who didn’t always understand why I had periods of great productivity and times of poor concentration and inertia.
When receiving a diagnosis that changes the way you have lived until that moment can be devastating and confusing. My personal experience after being diagnosed with Chronic Fatigue Syndrome and Fibromyalgia shared similarities to Kubler-Ross’ stages of grief:
Relief – I am not crazy and there really is something wrong with me.
Denial – I’ll just take some pills, try alternative medicine, and do whatever my doctor says and will be fine.
Anger – Why me? It’s not fair that I can no longer do the things I used.
Depression – In my case, I do not believe I suffered from depression, however, not being able to live the life I had previously was depressing. Sure, I had days of sadness especially when I had debilitating flare-ups.
Acceptance – Ok, my life is not the same but that may not be a bad thing. I can explore new ways to fulfill my life.
I reached acceptance when I realized that it was time for me to look at life differently. I no longer feel like I am just existing but am living life on my own terms. There may be some things that I no longer do but many new doors have opened and I see opportunities as limitless.
I have the support of my family, married the greatest man in the world last year, and am managing my life better than ever. This is why I coach people with chronic pain and illness. We all have the right to live a full life.
People who live with disabilities look at life from a different perspective than so-called “healthy” people. But – and this is a BIG BUT – that does not mean life should be looked at as limiting. It is a matter of reframing who we are and what is our life purpose?
My life purpose is to guide others towards a more joyous rewarding life. If you are interested in learning more, keep following my blog or send me an email at: firstname.lastname@example.org.