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Feeling Alone with ME/CFS, Fibromyalgia or POTS? Why Finding a Connection Matters – A Tribute to a Leader of the Community

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Chronic Fatigue Syndrome

It was about 4 years into severe illness, when pain had become more than just an issue during flare ups – it had become a daily occurrence.

What was causing all these symptoms?

Just when I had found a way to adjust to a new normal, a new symptom would pop up or the symptoms would worsen to once again make my life seem unbearable.

For years I had hopped from doctor to doctor asking about this flu-like illness that simply wouldn’t go away. No one gave me any answers that made sense. Something was wrong—what was it?

I felt so alone in the world. My life was reduced to existing and surviving. Nobody understood what I was going through, not even those closest to me.

My illness had become like a dark secret. Most people didn’t even know what I was going through. I chose not to tell most people, because I had no real answer for why I was sick or what was wrong with me. So most strangers and acquaintances didn’t have a clue, and given that I often looked well, it wasn’t hard to hide as long as I kept my appearances to short times during better days.

With friends, there was little point in talking about it. While there was genuine concern and caring at first, the conversation soon sounded like a broken record. They had no answers for me anyway, and as my suffering deepened, it became clear that they had no idea what I was really going through. Inevitably, when I had not spoken to them in a while, or the topic of the illness had not come up for some time, they treated me like a normal person and often showed no understanding or concessions for my misdemeanours such as cancelling at the last moment or being late.

The biggest frustration was not knowing what was wrong with me, or perhaps more accurately; not accepting it.

Given the nature of the early symptoms—the flare-ups of flu-like symptoms—I had taken to heart my first diagnosis: “It’s probably a virus. There are many viruses and we can’t diagnose them all, it will pass in time.”

But when weeks turned into months, months into years, and the list of symptoms kept growing, my reluctance to accept an answer also grew. After doctor hopping for a year or two and more tests than I can recall, I had also explored complimentary health care practitioners. I went from no answers to countless answers. Suddenly everything was wrong with me. But of course, none of the treatments made any lasting difference.

So yes, eventually a doctor had spoken to me about Chronic Fatigue Syndrome once. I say once, because that was the last time I saw him.

Chronic Fatigue Syndrome. I was much more than just fatigued! I felt like I was poisoned—infected. There was something really wrong. I had given this “fatigue syndrome” a cursory look, but nobody even knew what it was or what was causing it. That wasn’t me. I had a real illness!!!

Enter My Friend Google – I Am Not Alone!

I don’t remember exactly what pushed me to Google a deeper search into ME/CFS. Was it the pain? Was it a second diagnosis? It was probably simply the desperation of yet another week of misery, weird symptoms, sleepless nights and the loneliness at 3.30 a.m. as I stared at that all too familiar Google home page.

Stupid Chronic Fatigue Syndrome. What is that even supposed to be?

I don’t remember what I typed in, but after bouncing around the net for a short time, I came to a story that grabbed me.

It was about another man describing his journey and his symptoms. As I read it, I felt perhaps the biggest rollercoaster of emotions of my life. I literally felt my stomach lurch as he described the extensive list of symptoms that mirrored my own.

Even now more than a decade later, I find myself getting goosebumps remembering this moment as I write about it.

There was almost a thrill in seeing someone else describe exactly what I was going through. The details of his experience were uncannily like my own. It was gobsmacking how I had never heard anyone in my life have anything like what I was going through, yet here was this stranger with exactly the same symptoms. The way he described them made me certain this person shared my burden.

There was an elation. Why? Because I felt it was proof to all those doubting eyes I had come across over the years. Proof my experience was real. I knew it was real, but yet I still often felt like nobody really believed me for all those years.

I felt validated. I no longer felt alone in the world. I somehow had a connection with this stranger somewhere in the world.

But it also triggered fear.

There were other symptoms that I was only just starting to experience. Things that I had resisted noticing, like my extreme reaction to smells that had happened on several occasions.

And this story was of someone that had been sicker longer than me—much longer.

Validation, exhilaration, hope, disappointment, fear; my head was spinning.

The Impact of a Shared Burden

I remember just staring at the screen. No longer reading, not even thinking, just stunned.

So it was real. This Chronic Fatigue Syndrome was really what I had, not just some wastebasket diagnosis by my doctor who had run out of ideas.

I started my Google search again, looking at all the same pages I had seen long before describing ME/CFS. But while I had previously looked over them, I suddenly hung on every word. And it wasn’t good.

Everything I read made me feel hopeless. Neither my experience nor my counterpart’s experience suggested that I would be able to fix this and get my life back.

Talk about bittersweet.

It’s like years of confusion, fear, resistance and frustration had all come to this moment of acceptance.

But despite the mixed emotions, the fact that I was no longer alone in the world, had a profound impact on me. It was like the lens through which I viewed life had changed.

No longer was there that same edge when explaining myself to doctors. After all, I am not the only one experiencing this.

No longer was there that same loneliness when not even those closest to me didn’t understand my suffering and poor behaviour as I struggled to cope. After all, others walk the same path.

No longer was there that same level of uncertainty about how I could possibly face my future. After all, others had gone before me and managed somehow.

No longer did my heart feel quite as heavy.

Perhaps most importantly, I no longer felt lost. While not feeling uplifted about my future prospects, at least there was a level of acceptance that allowed me to move forward.

Cort Johnson

Cort Johnson

So who was my hero that changed how I saw the world that night, many years ago? It was Cort Johnson. I don’t remember the website where I saw him tell his story, but I remembered his name.

I imagine that article impacted many people like me. I did not meet another person experiencing ME/CFS, Fibromyalgia or POTS for many years after that fateful night. But many years later I came across Cort’s website HealthRising.

It’s always astounded me how a person experiencing this illness could possibly do as much as he has. The impact of his work in sharing an understanding of the illness, sharing our plight and sharing the research is nothing short of profound. His open-minded attitude and scientific analysis are amazing. I have had several doctors tell me that they read his articles and are “astounded by his ability to break down complex scientific research into something the layperson can understand.”

Every sport has their hero. Every community has their hero—their leader. For me and thousands, perhaps tens of thousands or more, that hero is Cort Johnson. Thank you for all you do for us, Cort.

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By ProHealth-Editor

Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE, the very first full-color, glossy magazine devoted to FM and other invisible illnesses. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, and then for eight years as the Chronic Pain Health Guide for The HealthCentral Network.To learn more about Karen, see “Meet Karen Lee Richards.”

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