An excerpt reproduced with permission from the journal of Karen Dickson, a CFS/ME patient in the UK October 2006
I have been ill now with ME for almost three years… and I speak about my illness so seldom. It sounds so indulgent. And it usually results in me in floods of tears. Rationally, I know that voicing and sharing my frustrations may actually help ease them, and that by listening to me without judgment, my friends are allowed to do something meaningful for me. But it is hard to talk openly. To share truthfully or to share appropriately? How much detail to go into? What mix of hope and despair? Such a balancing game.
Michael J. Fox speaks of the Parkinson’s disease that has ravished his body as “his invisible elephant.” He explains that it is a weight he is forced to carry around his neck each and every day of his life. It does not just get better. He says that some days he looks better than others. Then, ironically, well meaning friends will compliment him on looking stronger and healthier, as if it is something that he has succeeding in doing. As if their encouraging words may motivate him to try and look better the next day too. But anyone who is battling to carry an invisible elephant will tell you that Encouragement and Motivation are not strong enough pills to make you feel and look better the next day.
So how do well meaning friends help then? What do we “sick people” want them to do or say to show their support and care? I don’t really know. I find it hard enough to know how to handle me, let alone suggest to others how I would like them to handle me. I suppose that there are things I would definitely like friends not to do.
n Don’t tell me to get out more so I don’t get all miserable and depressed. I am not depressed – I am sick and sore, and getting out is difficult and not always possible.
n Don’t leave me out of their group get-togethers in an attempt to spare my feelings. I still want to feel invited. Leave the difficult decision with me whether I can make it on the day or not. Please don’t decide for me – I am already feeling so powerless that I cannot bear if they were to make my decisions for me too.
n And strangely enough, don’t tell me that I look good and better today. I may in fact be feeling terribly sore. And kind, well intended comment means that I then have to pretend to be feeling well, to save you embarrassment. I understand that people think cheery encouragement and motivation are good things, but they are bitter pills to swallow when I am really struggling.
I know it sounds cheeky to make these extra demands. I guess their other friends may not expect such special attention, but that is the real crux of the matter. Although I want to be just like their other friends, I am not. I am the sick one. And for the time being, our friendship is going to be physically one-sided. It is them always driving me, them pushing my wheelchair, them getting the extra supplies for a last-minute lunch, them carrying the tray of drinks, them picking up the children when they fall, them taking my kids on day trips just to get them out a bit, them getting to do all the physical work while I get to just perch helplessly on a chair. I am sorry for that. I can’t wait to be able and capable again.
In the meantime, perhaps this is the best thing that I can do – write this down so that you there can read the things that I do not feel brave enough to verbalize to friends here. There are loads of encouraging pieces filled with hope on the support boards, but few brave enough to expose the side of shadows.
Perhaps another sick person can pinch my words for a short while to help explain themselves to their friends. I think that maybe sick people all speak with the same voice some of the time.
I also try to be a dependable friend, a thoughtful neighbor, a supportive and involved parent, a thinking member of my community…Sometimes I succeed.