Robie (Kristen) Robitaille (daughter of Bob and Kathy), 40 years old, ME/CFS 14 years
For the past 14 years I have suffered from fatigue. I spent 12 years of that time just trying to figure out why I was constantly tired. I had no guidance from medical professionals. I bounced from doctor to doctor, trying something different during times when I would be so desperate for relief from the unrelenting sensation of moving through mud and thinking through fog. I saw physicians, acupuncturists, psychologists, psychiatrists, chiropractors, and a hormone specialist; tried veganism, the paleo diet, a numbing agent injected in the back of my head, anti-depressants, Chinese herbs, neural retraining, chakra alignment and lots of different supplements.
My condition has gotten worse over the years. What little social life I had stopped a few years ago. I am unable to work. I am no longer able to exercise. I can’t read more than a short article. I am mostly housebound. If I do go out to an event or a family gathering, my condition deteriorates even further. The resulting crashes now usually last about 2 weeks. During these periods, I am constantly nauseas and feel physically very ill. I become ultra sensitive to light, sound and visual stimulation. I experience severe headaches and emotional instability. I can only move between my bed and the bathroom, and feeding myself becomes a challenge. The most painful of all is that I completely lose the ability to read. So not only am I unable to escape my broken body by diving into a good story, but I also lose the connection to my online community of fellow housebound sufferers of invisible illnesses.
These severe crashes are terrifying. On top of feeling like death, I have to balance a positive outlook with the reality that if I continue to push myself to enjoy the things I love, I could end up completely incapacitated.
I have just started hearing stories about other people who are frustrated that ME/CFS is keeping them from finishing graduate and doctoral degrees. I am sorry for them, but their stories do help me feel justified in dropping out of school, which is something I never imagined I would do. I love school, and I love the path I was on before being floored by this illness.
Four years ago I began the masters of counseling psychology program at Texas A&M University in Central Texas. 2 years into my program I did my practicum, where I served as a counselor for men, women and children. It was like a dream come true! But I was SO SICK. Between clients, I would curl up on a couch and cry because it was so hard to sit up and focus during sessions. Once a week throughout the semester, I would spend the night sleeping in my car near the counseling center in order to spend less time driving and more time sleeping.
All of that effort and there is a stigma that I am lazy. And no doctor could tell me what was wrong with me. Since that painful practicum 2 years ago, I moved to a friend's farm, stopped working and slowed to only one class per semester.
I have a 4.0 GPA. I have one and a half classes and two internships left. I believe I would be a great therapist. However, I will most likely be unable to complete my masters degree because I have ME/CFS. Last semester, I suffered through the grief of acknowledging this fact when I became so sick that I had to drop out of school.
Instead of working to fulfill my dream of helping other people through their own difficult times, I spend my days lying around by myself, trying not to dwell on the fact that life is passing me by. This condition started when I was 26 years old. I am now 40 years old and planning to move halfway across the country to live with my folks because I am no longer physically or financially able to live on my own.
Of the estimated 2 1/2 million Americans with ME/CFS, straining our economy by an estimated $17 billion, how many of them are being held back from aspirations of helping others? Of creating art? Of becoming a parent. Or of being a leader in the community? Millions of people around the world, full of potential, are wasting away day after day on a couch or in a bed because research for ME/CFS does not receive the funding it requires to discover treatment options.