Many of us with Chronic illness suffer from guilt in many forms, e.g. guilt when you have to cancel appointments at short notice when you aren’t well enough to attend; guilt when you do make it out but feel you are the nuisance who needs to be able to get a seat and that you don’t have miles to walk to reach the toilets; guilt when you feel you are having to ask too often for assistance just to do ordinary everyday chores; guilt because you have to cause extra expense to pay someone to carry out the jobs you can no longer manage; guilt when you look around your home and realise that you need a shower, the bathroom needs to be cleaned, and a pile of ironing is waiting, knowing you have to chose the 1 you CAN manage, and the rest will have to wait; guilt when you see the shabbiness in your home, but as you can’t afford a decorator, it is renamed shabby chic. I could go on, but you get the picture!
Then we can move to the workplace: guilt when you are afraid others might feel you are not pulling your weight; guilt when you know you have had a bad night and so you will not be firing on all cylinders, but you must go in; guilt when you do have to stay home sick as you know others have to cover for you……
I find there was a constant battle to find a good balance in my life, but I am afraid I failed miserably as I now have virtually no social life, and have not been on holiday for several years. Why? Guilt; because if I want to enjoy myself and not be a burden on others, I need so much organisation to make sure I am comfortable. I need a plan of how to get there and back and I cant cope with long lines queuing.
I live in Edinburgh and I used to love the summer when the city comes alive with the tourists then the various festivals. However, most of the venues require you to queue outside as no seats are book able, the shows, in particular some of the comedy ones, are on late at night, which in another life was no problem, as I live in a fairly central location, we would simply walk as it would be after the buses stopped running and there would be few taxis around. Not now, so either I am a complete nuisance to everyone, or simply stay home. I cant cope with the payback when I am not sensible, these days.
Because I try to be cheerful and smile etc - I found before I became as bent as I am now, that people would not necessarily think I had a chronic illness, so sometimes I would get strange looks from people when friends would make sure I had a seat etc, at least now I am very bent and need a stick, it is patently obvious there is something far wrong, so I don’t have the guilt making me feel the need to explain - strangers don’t need the details, they can now see as much as they need to know!
So really the bottom line is that I find there is a terrible feeling of guilt as my chronic illness affects so much of my life, and therefore the lives of everyone else around me. In my case this has meant a virtual withdrawal…from life, the guilt is too great.