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 how I was.
In reality, the problem is 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 an 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.
I will let you know how it is going.
Jonathan Davis is a Police Officer living in rural Aberdeenshire. He was brought up in the Outer Hebrides before leaving home to study psychology at The University of St. Andrews. In 2004 he joined what was Grampian Police, now Police Scotland, where he has 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, he was a keen cyclist, climber and skier. More recently he has devoted himself to highlighting the experiences of those with ME/CFS in their communities and raising the profile of this all too often hidden condition.
Read more on Jonathan’s blog HERE.