Monday, 24 June 2019

The Loneliness of the M.E. Monster

June 20, 2019

by Jessica Taylor-Bearman (author of “A Girl Behind Dark Glasses” - click here).

It is National Loneliness Week and I want to talk about how loneliness has affected me within my M.E. journey. When I first became chronically unwell, my life changed dramatically. I had been a very sociable 14-year-old, who enjoyed school and being with my friends. The truth was, I didn’t have that energy to spare anymore. At the beginning, I didn’t have the mental or physical energy to spare to socialise and it was something that I missed greatly.

After a few months, my friends would see me less because they didn’t know when I was well enough for a visit, and I happened to live in a little village away from the school, so I missed out. It is amazing how a house can be full of people (I was in a family of five), yet still feel like you are totally alone. No one could really understand what I was going through, and this just added to the frustration and loneliness that I felt being so ill.

I moved to hospital at the end of 2006, and that was insufferable. My family stayed with me at first and became my advocates, and social stimulation. However, after a few months, they were not allowed to come to the hospital for more than ten minutes a day. This was when my loneliness hit its lowest. I craved communication, but the nurses didn’t really have the time to try and work out what I was trying to say and didn’t know how to listen to me. My family were chaperoned when they were with me, so I didn’t get to spend any quality time with them. My mood dropped. I stayed positive because I had to keep telling myself that it would get better, but I started to dream the day repeatedly. I didn’t know when I was in reality and when I was dreaming. It was miserable.

This was before the days of social media. We had a little bit in the form of MSN Messenger but there was no Facebook, Instagram or twitter to connect to more people suffering with M.E. or any other chronic health disease. I didn’t know any other people suffering from ill health, let alone chronic health. It was a completely new to me. Social media can be both a blessing and a curse. I would have loved it to be around at the beginning because I don’t think I would have felt quite as alone but also to see what all my friends were up to would have been quite upsetting because I couldn’t join in.

In the time that I was completely missing, I felt like my friends and family didn’t really know how to deal with me. I was unable to communicate and this was problematic. I watched as they all grew up, and I didn’t join them. It was incredibly hard to watch the changes and not be able to do anything about it. The world of one room became my safe haven. I knew what was going on in that room, it had become my whole world. I didn’t see anything outside these four walls. How could it be so lonely inside it?

When I started to re enter the big wide world and started to be able to see my friends a bit more, it made me realise quite how much I had missed. I had lost out on so much and it was incredibly painful. Friends were now at university, I hadn’t even got passed my GCSES at school. I was stuck in a time warp. I challenge anyone to not feel lonely when you realise what is lost or you can’t find your tribe of people who get you. This is where all the social media outlets became incredibly useful to explain my life to someone else. I felt like I could connect with people for as little or as long as I was able to. I started to learn what my identity was. For years, I think that the M.E. Monster was my identity. It had taken over every aspect of my life, I had nothing else. I have started to improve further, I think I struggle more to know who I can connect with. People don’t expect me to still be suffering from loneliness but it is still there, just in different aspects of my life. Connecting with other people who suffer from this is very helpful, but it doesn’t really solve the problem. If I could say one thing to a person who doesn’t suffer with ill health, it would be: don’t forget those who go a little quiet on you.

They are probably struggling in more ways than one and need people to rally around them.

Be kind.

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