There are many things that come with having Chronic Fatigue Syndrome but for me the hardest part at the moment is the constant feeling of guilt. It comes in many different ways and to those who don’t have an illness like this will probably not understand. Guilt is a very strong emotion and doesn’t necessarily mean you have done something wrong as it is normally perceived.
It starts with guilt of being unable to participate in things others do, not being busy just having the reason you aren’t well enough. It’s the horrible feeling of having to have a sleep in the middle of your loved ones birthday or not being able to meet your friends with no reason that being in bed instead. It may not just be because you feel ill either. It could be to prevent those symptoms coming, something so hard to explain when people only ever see you when you’re ‘fine’.
However, sometimes I do feel okay. Some days I feel as if I can function quite normally. You would think the only thing that bought me was happiness. Wrong. Also guilt. Guilty that I work part time due to my condition, guilty that people make exceptions and special arrangements for me even though on these days I might be able to do things. These days usually lead me to doing anything and everything I can in order to feel better about myself which in turn leads to me crashing and being right back to hardly getting out of bed. An endless cycle I cannot see the end of.
That leads me to getting upset. I regularly have a few moments where I can’t see how I can carry on with life for all the years to come when I’m only 21. All the hospital referrals. All the support I already require off my family. The feeling of not being the true me. I dream about who and where I would be without this illness and it’s hard to shake that. I know they say don’t cry over the same thing twice but that is not possible when that same thing still hurts as deeply. I feel the guilt of the sadness it must bring on people around me, seeing me upset, dragging them down to. I don’t want to do that. Sometimes I just can’t. I do pick myself; feel better and ready to carry on, just find myself apologising for days about having a wobble as it keeps replaying in my head.
A big thing for me at the moment is that I just started to work. Part-time is all I can manage and that’s tricky enough for me. To colleagues and people who interview me, they see a young girl who just graduated and ask with such confused expression why I would want to work part-time when there is so much I could do. The truth. I dont want to but I’m also happy I am able to do that. I don’t want to explain myself to everyone and say actually I’m poorly and I’m not supposed to work at all. I want to keep that persona of the young, healthy girl who works hard but at the same time I crave understanding from everyone around me. I feel guilty for getting mad at people saying things. I feel guilty at myself for not explaining things to people. It’s just so hard to open up when most people I have spoke to in the past really don’t take anything on board…
So that’s at work but then there comes the guilt of not working full time as I dont earn as much money. I don’t bring as much to the table. I have 4 days off a week while everyone else works so hard and I’m still the one getting looked after by everyone. It’s just unfair.
So there you have it. A few aspect of guilt that comes with my illness – Chronic Fatigue Syndrome. The illness that rules most of my life. The illness that brings the strongest emotions. Guilt being a main one.
Hope you enjoyed reading. Would love to hear if anyone feels the same or has any advice for people who feel this way.