Perhaps my first blog posting should have been this one but owning up to this thing continues to be so hard.
For the first month of being signed off work, I went out of my way to make sure people didn’t realise I had M.E. It wasn’t because I was ashamed about having it, no, I think I accepted it very quickly although I’m still trying to understand the reality of it!
I went to a wedding in Ireland 5 weeks into this thing: I couldn’t drink, I couldn’t dance, I struggled socially, I was in bed by 11. I hadn’t even told my family – my sister was convinced I was being moody and I should snap out of it. I don’t blame her – any normal person would have thought I was being moody!
I didn’t tell my family because I didn’t know what was going on and I didn’t want to worry them. I didn’t tell other people for so long because I felt I didn’t want to shove it in people’s faces. I felt that telling people about it was being self-centred, like I was looking for attention. I was desperate for people not to think this.
Initially I went out of my way to make sure nobody knew I was not working: I didn’t make phone calls, send text messages or emails or post on Facebook during working hours. I hated to think people would think me lazy – I had worked with enough Sick Notes as they became known, people who it seemed were off sick only because they couldn’t be bothered to be in work. I didn’t want anyone to think that that was me! It does make me reconsider my opinion of these people now!
Slowly I began to say to people: I have M.E. ‘at the moment’. I don’t think I had yet accepted that this thing could be long term. I tried to portray it to be like having a cold. A temporary thing that wouldn’t be around for long. A thing that didn’t need sympathy and didn’t need to be worried about.
I now say, I have M.E. which shows acceptance to a degree. I won’t let my illness define me however and so I don’t bandy about the term willy nilly. I now reluctantly but do say it in coffee shops when I can’t queue for my coffee and need someone to get it for me. I have told my estate agent so he knows to always explain things clearly to me. Slowly, I am letting it slip out on Facebook as and when not mentioning it would be hiding things from my friends. I still don’t believe I should let it define me and feel it would be wrong to always lead with it. I want people to see the Karen they have always known – I’m just a Karen who feels like she runs a marathon every day after a night out on the drink.
This blog I guess is my biggest declaration that M.E. has become an important part of who I am. It has taken (temporarily) my great love from me – teaching so I am going to use it to restart a love I had as a child and teenager – writing.