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…