Losing Myself to Myalgic Encephalomyelitis


The doctor walks into the room and gives me my diagnosis – myalgic encephalomyelitis (ME). Finally, a name (and what a name!) to what has been happening. A sense of relief actually washes over me. Almost a weird sense of elation. Even though I’ve just been told I have a chronic, painful, incurable condition. A name though…. that has to come with answers and treatment options. Right?? But the elation is short-lived. I realized all I got was a name, not solutions, not answers and there was no talk of a cure. There is no cure. Instead, with that name comes losses and limitations, both big and small. Some that don’t really matter and others that are beyond heartbreaking.

I begin to grieve for the days of having control over my day and of knowing what the next day holds. Or if it even holds anything. I grieve for it all because at just 44 I have lost so much of what is important to me. I grieve for the loss of “me.” Not even a year under my belt, it still constantly overwhelms me. I have debilitating days and some decent ones. But not a single day of being me. And I really miss me – that me was fun and full of energy with an endless sense of adventure. Ironic that my condition’s abbreviation is ME, when that’s the biggest thing that feels lost.

In time, I have gotten very frustrated, frustrated at how much my life has changed and that I had no say in it. I’ve worked too hard to get to this point in my life; I wanted, needed, a say. ME is not going to define me. I decided I was going to do what I’ve always been good at doing when problems arose. Study, learn and fight back. So, every day I force myself to find the right balance of pushing myself on my bad days and holding myself back on a “good” day. It’s a daily, sometimes minute by minute, challenge to keep myself in this game, to overcome the symptoms and flare-ups, accept the losses, and on some days simply be OK with just making it through the day without a single productive moment. That is so, so hard some days! But as time has gone by, I have started to discover that in a universe of pain there’s also a world of amazing new opportunities. So, I began to open my mind up to them.

ME – you give me memory loss, I will tell you that I can’t worry about what I can’t remember.

ME – you give me a lack of coordination. I will tell you I am now a Tai Chi aficionado.

ME – you slowed my type A personality down, and I discovered yoga and meditation are the path to inner peace.

Don’t get me wrong, it’s still not all roses. I have days where I still grieve, where I’ve lost my fight and am too tired to even open my eyes for an entire day, and where I deeply miss that old “me.” Where I feel deflated and mentally bored to tears. And days I fear that one bad accident or major life stressor will take me too far down. But while this disease may be very “in your face,” I am now fiercely dedicated to getting right back in its face with what I can do. I am now a wiser, more enlightened me. I may still have many limitations but I choose instead to focus on the world of new opportunities that I never thought twice about before.

I am me, not ME!

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