Making ME/CFS Visible: A Personal Story of Struggle and Hope

In a month, I will turn 40. It’s difficult to pinpoint exactly when I fell ill or how long I have been ill.

I know that I felt my health surely deteriorating about two years ago. Over the last two years, I saw the range of chores, work, and other daily activities I could easily accomplish in a day slowly and drastically diminish.

It was in 2021, during one year of overwhelm and heightened stress on personal and professional levels, that I contracted at least 6 viral infections including mononucleosis, flu, and COVID-19. The first viral infection had been mononucleosis. It left a clear and utter mark on my physical health. I sense my life has been fractured into a before and an after of this mononucleosis infection. The last viral infection I contracted was COVID-19. The latter irrevocably demolished me. I spent ten months seeking medical help and subjecting myself to denial and abuse from the medical body. In April 2023, I was finally diagnosed with ME/CFS.

Receiving a diagnosis relieved me, as I was finally able to put a word to the continuous physical pain I had been feeling since I contracted COVID-19. Soon after, relief gave way to sadness, anger, and fear. I was lost. I felt alone and confronted by a monster that was feeding on me from the inside out and turning my life upside down. My life accomplishments, projects, and goals for the future no longer made sense because my future looked nothing like my past.

I am a hospital clinical microbiologist, lecturer, and researcher at a university. Diagnosing infections, advising on antibiotic therapy, improving patient care, training younger people, conducting research, publishing my scientific work, participating in conferences, and implementing new diagnostic techniques were my little daily pleasures. My work is, or rather was, my passion, and my first reason for being. I worked in the field for over 12 years, following nine years of study.

In April 2023, in a single day, my diagnosis revealed that I will no longer be a caregiver but that I will need to be cared for – even if in truth, little care is possible for us with this illness. Overnight, the hospital where I worked and that I called home became a nightmarish place that plagued my existence. I had been slowly feeling my work capacity diminishing, until it became impossible to hold meetings with clinicians, to carry out my experiments, to sit under the microscope, to train the trainees. I, who we called a free electron at work, became nothing but dust.

Following the diagnosis of April 2023, I attempted to fight but lost, I tried to pursue my work but failed, for two whole months. I finally decided to give up, or at least take a break from my professional life. I’ve always hated endings.

The decision to stop working was, as you can imagine, far from easy. But it was accompanied by the decision to not burn whatever ether of life I had left and to conserve whatever little energy that remained and dedicate it to my family, my children, and my husband. I came to the confronting realization that the hospital and university where I worked would survive without my presence. However, my children are still young, and still they need me.

Accepting being a sick person, incapacitated, and dependent on the help of others daily is a major challenge. I had never imagined, not even for a second, that at 39 years old, I would need a wheelchair to be mobile, and that my husband would be behind me, pushing the chair, instead of next to me holding my hand. I had never imagined, not even for a second, that at 39 years old, I would need to phone a pharmacy, located merely 50 meters away from my house, to order my medicine so that my husband could go and collect it for me after his work.

The shame and guilt I face as an ill and physically disabled person are just as difficult to accept as accepting the illness. Being a sick mother, however, heightens those difficulties and inflates the suffering tenfold. I am unable to run after my children, dance with them, accompany them on school outings, carry them, take them for walks, or even pick them up from school, only 200 meters away from my home. It is every parent’s nightmare to not be able to meet their child’s needs. I find my inability to be the mother I want to be utterly devastating. My time with my children was a source of pleasure and happiness. I had very few moments of happiness and sharing with my parents. Sparing my children with such a lack of connection had always been my priority. But this illness has put me in a position that I fear. Being unavailable to my children is not something I can live with.

Many uncertain months following my diagnosis, I understood that this illness weakens my muscles, my nerves, my immunity, my memory, my lungs, and my heart. But thankfully, it has only strengthened my mind. My mind has protected me in previous traumatic situations, and it continues to do so today. I never give up. Mind power is far greater than we can imagine…  

I found salvation in the power of my mind. Today, I recognize how this illness has degraded the quality of my life, but in return, it has strengthened my love for life.  I have decided that instead of fighting the illness, I would better attempt to tame it, to live with it and learn to take care of myself. I have nothing but time. So now, I am taking my time to care for myself. When I need to cry, I cry. When my legs no longer carry me, I lie down. When I’m tired, I sleep. I savor the little joys of life when I can: read, write, draw, take a few steps in nature, and listen to a song….

In my misfortune, I was incredibly lucky to have a husband who never gave up even in the worst moments, and who always believed in me. When I saw his eyes sparkle, like never before, the day I managed to go to a concert and stand up next to him for a few minutes and dance, I understood that I would never be alone.

Today, I am reinventing my life with my husband and our two children. Inspired by my experience, I wrote a story to help children cope better with their mother’s illness. We plan to publish the book in the coming months. The four of us are working on it and living this new great adventure together.