Owning up

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.

2 thoughts on “Owning up”

How do you feel about this topic? Do any of its ideas resonate with you? I'd love to know your thoughts! K

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