People and Pain

I’m sure it isn’t just me but I felt like I told a lot of lies when it came to my chronic fatigue and pain.  This probably got me down more in a lot of ways that the actual symptoms themselves.  So much of my energy was devoted to pretending that I was ok because I don’t want to burden others.  Conversely when I did confide in someone I wanted them to fully comprehend my situation and, to my shame, I got annoyed and frustrated if I thought they didn’t understand.  Sad as it is to say fatigue and pain are a big part of my life.  They dominate what I do and what I think for the majority of the time.  I guess I was stuck between wanting to offload this nightmare onto others and equally not wanting them to suffer as well.  I felt like I was walking a tightrope made of razor-wire.

I got really annoyed with myself when people asked how I was and I automatically answered “fine, thanks”.  I’m not fine, I’m pretty far from fine but I worried you would be offended if I told you that I was in agony.  And once I’d said that I was fine I then felt I had unwittingly committed to pretending to be fine despite being very much to the contrary.  A lot of the time I haven’t got the energy to explain what’s wrong or argue that no it isn’t all in my mind and no I don’t need a good walk to clear my head!  I didn’t think I was brave enough to break from the social norms and say “you know what, I’m not great actually”.  So I took the easy option which had the added bonus of lowering my self-esteem because I thought people didn’t want to know about how I was.

In reality the problem is entirely with me and thankfully there is something I can do about it.  From now on I am going to be braver.  I made a deal with my wife that I will be honest with her about my symptoms.  So when she asks how I am I will tell her, warts and all.  Already I feel more at ease, together we acknowledge the pain and the fatigue and because of this it has less control over me, and us.  I don’t waste energy pretending to be ok which leaves me with more reserves for other things – things I enjoy.

The next step is to go public!  From this point forth I will do my best to be open and honest about how I am.  Not to the point of tedium though, I’m conscious I do not want to become a ME/CFS-bore but at the same time I doubt I will become a social pariah just because I am honest with myself and others about how I am coping.  It does feel a bit odd, like I am bucking a trend slightly but I know this is the right thing to do.  After all ME/CFS is a hidden illness and that has to change; pretending it doesn’t affect me isn’t exactly going to help that.

In a few weeks I will let you know how it is going…

Author: Jonathan

Hello! My name is Jonathan. I have ME/CFS and have done so for around 2 years. I live in rural Aberdeenshire with my wife and our dog Trudy. I am originally from the Outer Hebrides where most of my family still live. After school I left home to study psychology at The University of St. Andrews and moved to Aberdeen after graduation. In 2004 I joined what was Grampian Police, now Police Scotland, where I have enjoyed a varied career in a number of operational, community and partnership based roles including a 2 year sabbatical working in residential child care. Prior to developing ME/CFS I was a keen cyclist, runner, climber and skier. I love the outdoors, always have since I was a child, and I try to spend as much time outside as I can. I have never blogged before so this is a whole new experience for me. I hope you will enjoy the journey with me!

One thought on “People and Pain”

  1. Wonderful read and an amazing explanation of your symptoms and feelings. I think not being truthful to your self and others is a symptom of our modern lives – social media perpetuates this as people always post the perfect parts of their lives – the family holiday, the social events etc and rarely say how they truly feel. – one of my married friends constantly posted about how he loved and adored his wife (meanwhile my wife barrated me for not doing the same!) But it turned out these were not his true feelings and he was having an affair and are now divorced – and basically because he did not communicate his true feelings to his wife!
    I think you are very brave to expose your true feelings not just to your nearest and dearest but to the world.
    I hope this blog brings you some mental confort to what sounds like an afwul ordeal. Keep up the good work and look forward to reading more!


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