"My symptoms seemed to match with a diagnosis of ME/CFS rather than depression."

For almost 20 years I have struggled with fatigue, cognitive dysfunction, and other symptoms which, until several years ago, were attributed to depression and anxiety, although these diagnoses never seemed accurate to me.

Looking back, I can pinpoint the changes in my health to fourth grade, when over a period of about two years I stopped doing competitive gymnastics, competitive softball, and horseback riding, all sports which I loved doing. Over the years, my condition has slowly deteriorated from there with short periods of slight remission.

Throughout my teenage and college years I saw multiple psychiatrists who prescribed a variety of antidepressants and encouraged more exercise and more activity. This recommendation was echoed by other physicians as well. Throughout this whole time, I chafed at the depression diagnosis as it did not feel like it matched up with what I felt was going on in my body. In 2018 my new psychiatrist suggested that from her point of view, my symptoms seemed to match with a diagnosis of ME/CFS rather than depression and suggested that I try to be seen by specialist Dr. David Systrom. Dr. Systrom eventually diagnosed me with ME/CFS and severe dysautonomia after I completed an invasive cardiopulmonary exercise test. Since then, I have seen several of the best ME/CFS specialists in the state and I have also been diagnosed with postural orthostatic tachycardia syndrome or POTS, a type of dysautonomia.

Although I struggled for many years, I was able to graduate high school with modifications made to my schedule. I then attended Lesley University, took a year off and interned at both the Boston Museum of Science and at the New England Aquarium working with live animals.  I also worked at Mass Audubon’s Drumlin Farm in Sudbury caring for their captive wild animals during college. After I graduated from Lesley, I got a full time job at the Boston Museum of Science in the Butterfly Garden and then in Live Animal Center. In the 5 years of full time work, I deteriorated gradually at first and then more rapidly. In February of 2021, I finally got to the point where I was no longer able to make it through the work day and I had to go on leave from the Museum. This was incredibly difficult as I had a passion for working with animals and educating the public about them.

I am still unable to work almost three years after leaving my job and I am mostly homebound with some periods in the past year of being mostly bed bound. I am continuing to work with my specialists to try treatments to try and find options that help to improve my symptoms.

I first came across the MassME when I was coming to the realization that I was no longer able to keep working. Ken Casanova, the patient services coordinator at the time, was extremely helpful in guiding me as I began to navigate through the process of taking a leave from work and began the process of applying for disability. I have periodically been in touch with him for guidance on various topics since then and have found his knowledge extremely helpful. Navigating topics such as how to find a doctor knowledgeable about ME/CFS, figuring out the disability process and finding lawyers familiar with the illness can be difficult at best and MassME provides an invaluable resource for patients in these areas.

I am also extremely thankful for the advocacy work that MassME has done and continues to do. This work is done by dedicated volunteers who give their time to fight for ME/CFS patients. Recently, these volunteers, including my mom, have been working on pushing for new legislation in Massachusetts recognizing ME/CFS. ME/CFS patients have been neglected and ignored for decades and while the emergence of Long Covid has started to bring more awareness to ME/CFS as an illness there is still such a long way to go in terms of recognition of the illness, treatment, and services for patients.