It is now September, 2021 and I’ve decided to use this time in remission to put my energy into stopping the neglect of this devastating illness and get government institutions to properly fund research. I think the way this disease is currently treated is unacceptable.

My story began, like most, with a viral infection that would not go away. It seemed to leave my body wounded on a cellular level. I felt, literally, like I had been poisoned. My skin began breaking out in scaly hives all over my neck, arms and legs. I lost 25 pounds in a month. The fatigue I felt was more than incapacitating and the tenacity of it terrified me – I went on in this state for several months, completely unable to feel better.

My first experiences with this illness had introduced me to a frustration that would unfortunately follow through so many cycles of M.E. As is so common among those with M.E., I saw an infectious disease specialist, a dermatologist, a neurologist, an allergist, an endocrinologist and, of course, a psychologist. Those first innocent doctor’s appointments left me confused and aghast.

Every single one of these professionals told me I was either depressed, making it all up or both. This is what I mean by unacceptable.

After my ME went into remission, in the summer of 2010, I moved from Pennsylvania back to my hometown of Chicago. I was delighted to be home again and seeing all my friends. I started a new job and things were looking up. The Illness, I figured, was in the past; a war story I could tell in years to come with the sense of a proud survivor.

Devastatingly, though, I was wrong.

I had a few good years and then….

Since 2015, my M.E. has relapsed and remitted every year, sinking its claws into me every fall/ early winter and finally letting go sometime in April or May. The months of May through August are my ‘safe time,’ when I can be rather certain that the Illness will stay dormant. The rest of the year I live in either extreme illness or fear of extreme illness. Since there is no known cause of M.E., Even when I am not symptomatic, the threat of relapse is always there, looming.

I don’t know how or why I go into remission. I’ve been asked about it many times and I wish I had more to say.

Most importantly, M.E. is not a mental disorder. Those of us who live with M.E. mourn every day for our former lives that so often get dismantled by this illness. We dream of a cure that can give us our lives back. We have become physically disabled. Because this illness is invisible, the scientific and medical communities have largely used the archaic practice of sweeping it all under the rug. To this I say enough already!

I am determined to use my remission to get bring further light into this very prevalent yet long-neglected illness.

I will also post about my journey onward as I enter the time of year that is my “danger zone” in hopes that my remission will last. I will post stories, memes and articles as well as my own rantings. I look forward to meeting everyone and thanks for reading!

I went for many years thinking I was alone in my illness. I thought I was mostly alone in my anger, confusion and despair. Occasionally I would read something about ME/CFS patients who were furious about the lack of treatment and I felt a kinship with them. Then I would go into remission. Whenever my illness came back, this lonely, confounding situation presented once again.

What was this thing that made my body feel like it was dying?

I realized that although I may be somewhat alone in my anomaly, I am not alone in my illness.

I first got sick in 2009. It was ten whole years before I learned of the true extent, severity and seriousness of my illness. Yes, I knew that something was horribly physically wrong with me, but my understanding of my situation didn’t sink in until I read Hillary Johnson’s Osler’s Web. It was there that I learned the complete recent history of the disease and the true extent of the ignorance surrounding it. Riveted, enraged and astounded, I devoured that book like it was a holy text.

That it took me an entire decade to learn the details, history and other vital aspects of my own illness is unacceptable.

My experience with this disease has literally changed the way I see all things. Almost all new information now goes through a thick filter of cynicism. It has tattered my sense of trust far beyond just in matters regarding my health.

Today, if you Google ME/CFS, you’ll get a lot of information (some good, some bad). Despite the growing validity of the science behind the disease, it is very dismaying to go into Facebook groups and see the frustrations and despair that continue to plague patients. Dismissive doctors, callous family members, friends who don’t listen, recommendations of folk remedies, lab results that offer no clues.

How can something that feels so awful, so devastating and crippling go unseen for so long? The prime answer is funding. The disease, just like its victims, has been silenced and abandoned. Please help me in working towards changing this.

When I hear the word ‘controversial’ being used to describe ME/CFS, it always sparks anger in me. I don’t like my poor quality of life being ‘controversial.” I want my poor quality of life to be cured.

This word also conjures thoughts of delayed research and, subsequently, delayed treatment, like the controversy is what happens while we remain sick. Ominous figures in some backroom arguing, voices piercing, while we try to make out the words. What does this uncertainty mean for research funding, pharmaceutical trials and advanced treatment?

Yes, all this attention is a good thing in many ways. Much of the controversy is a result of bringing to light the physical causes and suffering of a condition long believed to be psychological

It’s just the word “controversial.” Like you might as well call it post-modern or a fad or something.

Like Sarah Ramey says in “The Ladies Guide to Her Mysterious Illness,” “Jeggings are a fad.”

An infectious pathogen isn’t.

So maybe it’s just the word. Controversy is preferable to blind ignorance. And the science seems to be proving time and again that ME/CFS is a physical and not mental illness. Much of the controversy is perpetuated by those in power grasping at the stranglehold of psychologizing the illness and insisting on antiquated treatment models that harm patients by chalking how awful they feel up to depression or some similarly vague, insulting simplicity.

I have been very pleased to see all the organizations in recent years who have come forward advocating for a change in the ridiculous treatment of this disease and for the rights of those of us who have lost so much of our lives to decades of abandonment from the mainstream medical profession.

With biomarkers possibly on the horizon, let’s remain guarded, strong and hopeful.

–Bridget O’Shea