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Marking My 'Lost Years' With Myalgic Encephalomyelitis

So here we are, Myalgic Encephalomyelitis Awareness Week 2022. I’ve been ill with ME for 6 years, 5 months, and 4 days. That’s 2,347 days of feeling poorly Every. Single. Day. That’s 2,437 days of waking up unrefreshed and aching from head to toe, of struggling to make it through the day, of watching the world moving fast around you but being unable to join in.

It can be hard to imagine something like that without actually living through it yourself. It is strange because in a way you get used to it as the days drag on, but at the same time, you never get used to it because you always have a feeling that something is not right in your body. Even though it gets harder and harder to remember what it felt like to be healthy with each day that passes, you can still feel that what is “normal” is not your body functioning properly.

I got sick when I was 24, and I am now in my early 30s. In some ways, I am grateful that I got to have my teenage years, go to university, and even have two years post-university, all before it became impossible for me to live a “normal” life for my age. However at the same time, I feel a lot of pain and sadness that most of my “living” in my 20s was taken from me, and now my 30s seem to be going that way too.

The way some people feel about the time of the pandemic, the way they view them as “lost” years while life was on hold, that has been what my life has felt like ever since I got sick, with the addition of being physically unwell the whole time.

I’ve been missing out on many milestones that my peers have experienced, and the older I get the worse it is. Most of my peers have been getting married, starting families, and that’s not even mentioning their career progress. All the while I feel a bit like my life has been halted at 24, wanting to be able to live my life like everyone else, but being trapped in a body that won’t let me.

In the stage I’m at now, I feel less of the acute pain and frustration I felt earlier on in my illness. I’ve even learned to enjoy life as much as I can, where I can, and that’s helped me to find more acceptance. I still desperately hope I will improve, and I often find myself planning all the things I will do once I am well enough. I now have a mental list that stretches to the horizon. I’ve always wanted to do and experience lots of things, and my illness hasn’t taken that from me. It has simply made the actualization of my ambitions much, much harder, sometimes impossible, and sometimes requiring some inventiveness or reshaping.

ME is a very real, physical illness that devastates lives, affects way too many people, and receives way too little funding. This ME awareness week I would encourage you to try to learn more about ME from good sources (I recommend the ME Association and my stories and other articles here on The Mighty) and also please consider donating to an ME charity if you are able.

Getty image by LumiNola.