Humans of ME/CFS
I have suffered with ME/CFS for 24 years. It has worsened with each decade and keeps me in bed 3/4 of the day. I am out of work and unable to do even basic things. There is so much I want to do and accomplish, yet my body always has other plans. I feel my body has betrayed me and that the universe forsaken me. I wonder what I ever did in this life or a past one to deserve this fate of being mostly bedridden and unable to partake in the things that bring me joy. Sometimes, after weeks of feeling terrible on a daily basis, I question whether I should stay alive. Maybe the next life awaiting me will bring relief! Then I remember my family. I stay around for them.
I was 22 when I moved to NYC excited to start my career as an actress. I went to Syracuse University to study Drama and wanted nothing more than to be on stage or on TV. But, in the spring of 1992, 6 months after having moved there, I became exhausted for weeks and unable to drag myself out of bed. I was lucky enough to have been taken seriously by a doctor at a prestigious medical school. She diagnosed me with ME/CFS and referred me to a specialist in NYC. Under her care, I slowly improved enough to get to auditions and managed to act in a few small plays. But, catering and waitressing to support myself was taking its toll and adding to my exhaustion.
I bought a book that ended up changing the direction of my life. It spoke about lifestyle change and looking at the stress in your life that may hamper recovery. Well, it was no secret that going on auditions and never being certain of income were stressful for me! So, I found a therapist and then decided Social Work may be a better field. Maybe helping others in need would help me on all levels, not just physically. I entered university and with much struggle, exhaustion, and determination, managed to get my MSW. I was never able to work full-time and feel ok, so by age 30 I was only working part-time as a therapist with my income supplemented by my parents. After my first child, the disease got worse. I worked even fewer hours. I had periods of lengthy flare-ups, shorter periods where I could manage, and by my 40’s and after my second child I was worse than ever.
And, that is where I am today. 46 and mostly bedridden. Not only do I suffer from a myriad of symptoms daily, but I feel like I am often a burden. My husband, my caretaker, rarely gets to see the vibrant woman he married. My kids too are heart broken when, for example, I can’t go outside and build a snowman with them. Damn this disease.