Humans of ME/CFS
I have always been a “do-er.” Until 2011, my life revolved around school, activities, and friends. From the outside, I had what you might call an easy, successful life. Sure, I had IBS, anxiety, and mononucleosis, but it was nothing I could not shove under the rug in frenzied attempts to keep living my life. I started graduate school after moving across the country and quickly took on as much as possible in attempts to fill up my new life. In spring of 2011, my life began to run on without me. I could not go to class; I had to drop extracurricular activities and eventually left school. I was dismissed by mainstream doctors and encouraged to socialize and lose weight. I felt like a failure. I fell into a deep depression as I left my old life behind. I cried in many doctors' offices when they proclaimed that my depression was the cause instead of a side effect of my illness. I returned home to live with my family where I started to live a slow life. Eventually, I found support from a specialist, therapist, and acupuncturist who helped me adjust my diet, lifestyle, and mindset.
My boyfriend has been my rock; he has shown me compassion I previously had not shown myself. This self-compassion is something I strive for every day, and it escapes me easily on the bad days when I blame myself for getting Epstein-Barr in the first place and not listening to my body sooner. In the last year, I have relied less on doctors and experts trying to fix me and focused more on listening to my body. I know I am lucky: I can get out of bed, I am back in graduate school (online) to be a counselor for people with disabilities, and I am getting married this year. I am not who I was before CFS/ME, and when I shed that identity I lost qualities about myself and friends along with them. I am slowly realizing what and who is meant to be part of me and my life, and accepting the loss of who I thought I would be. I want there to be a next step in my healing and do not know where to look other than within and with these communities. I shift between searching for a cure and wanting to simply live the best life I can. On this journey, I know that I have gained insight that can help not only me, but others in the chronic illness community. I am still getting to know myself as I am now, and am learning to truly love and value myself, perhaps for the very first time.