I believe this is one aspect that is usually overlooked when thinking about and discussing ME. In fact, there’s a movement called #Millionsmissing which aims to raise awareness of what it’s like to live with ME, to demand equality for all people with ME who have been stigmatised from healthcare and support, to demand effective treatment to manage the condition based on the best available evidence and to demand research funding commensurate to disease prevalence and burden. Really, to highlight that, although we may not be able to bang down doors and yell from the rooftops, we are still here and we need to be seen and heard.
At 21 years old, I hadn’t long left college and had started a new job. I was making new friends and getting to know the business. Having been off work for a couple of weeks with my labyrinthitis, it wasn’t long until I lost contact with my new work colleagues. The phone calls from the HR team lasted for a couple of more weeks until my doctor was able to write a sick-line explaining a little about my ME and the impact it was having. Then the calls dropped dramatically and any updates or contact I had hoped to continue to have with my new work-life, disappeared. Before long, I was pretty much written off and, as it turned out, I didn’t have a job any more. On one hand, that was devastating – it was pretty much my first real life job out of college and the one that, I thought, was going to help me take over the world!
There’s only so often a 21-year old’s friends will call or come knocking on the door to find out if you’re able to go out for the night before “normal” life catches up for them and you are left behind. I don’t blame them. They were starting out in their own adventure into proper adulthood. But it did sting. Why did they just get to decide to go out for the night on the spur of the moment, but I had to plan every detail of each day just to be sure I was able to eat a small meal?
Who decided that this condition was mine to bear and let them away with what seemed like a double set of fresh batteries that never ran down?
When would that be me?
When would my life actually start properly?
To this day, more than 20 years later, I still haven’t met the people I used to chat to online, in real life! We live hundreds of miles from each other but now connect via social media as well as birthday & Christmas cards.
- You do not need to be alone in your ME. There are some very good organisations out there that can offer you support. One of which is Action for ME and you can find them at actionforme.org.uk – why not reach out to them?
- Find something that works for you. It may be connecting online via social media, writing good old fashioned pen pal letters or having a text message exchange with someone when you’re able. You do not need to be in the same physical space with others to help break your isolation.
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