Dealing with friendships and relationships of all kinds is difficult, whether family, former colleague, neighbour or acquaintance. First of all, it has to be said that I understand everyone, no matter what the reaction. I also don’t know how I would react if it were the other way around. But I want to make it clear that it is not easy for me and for many other people with a disease like this.
Being severely ill is like a car driving over a puddle (to quote someone and try a metaphor): everyone jumps aside and is scared and panicked. Which one of these people dares to walk on the sidewalk again is uncertain. Some look for a new path and will l avoid the critical place. Some will return and wrap themselves in raincoats and rubber boots. Very few dare to return “just like that”, and to do like this takes courage! So it is with us, and with our friends and acquaintances.
To receive a message that a friend, family member or acquaintance is seriously or maybe even incurably ill, is at first overwhelming. One would like to say something comforting, to promise a positive development, but there is nothing. A piece of advice that one should deal with the situation well and make the best out of each situation, often goes to the back. You can’t pick out anything from your own life as a comparison and illustrate that you are „also in a bad situation“. “The work is so stressful, and this getting up in the morning…” This sounds often so small. I also have to admit, that it is often difficult for the other person, to „smell it from where“, how do I feel and how do I want to be tackled?
From my own experience, there are meetings that are good, and there have been meetings where the end is a relief for everyone.
For my family members I have written a kind of “leaflet” so that they know how to deal with me. This should make the meeting easier for me, and also for the others; that large groups, and when all of them speak at the same time, overwhelm me, that people in my back stress me, that when we walk next to each other, I will never look at them and that is not a sign of rudeness, that I avoid demanding food that is hard to swallow and hard to eat with knife and fork, that if I sit freely on a couch, for example, I can simply „fell over“, that my eyes have become very sensitive to light and I can see almost nothing in the dazzling sunshine. Walking the stairs is difficult, especially downstairs, and the escalator for me hardly works. That I want to know the proximity to the next toilet, how do I stand to alcohol. And so on.
I did this because I don’t want to do long monologues, about my own ailment, but I want to inform these people. The whole thing should be guiding only, because something new can always be added or something can change.
I have made the experience that family members are usually very careful with me, often they don’t know how to treat me, and they overlook – unknowingly – something important. On the outside, I don’t look like someone who is terminally ill.
Then there are the friends who want to ignore the disease, for them it probably looks like a little walking weakness. Those who don’t ask how I feel (for fear of something bad might happen?) and who are planning something with me, like before, such as visiting a Christmas market. They just don’t know that it’s horror for me. They think it’s “cool” to retire at the age of 50, now I can sleep in the morning or write a book.
Then there are those who take care of me, want to know everything and put themselves completely in the background, and concentrate only on my needs. Those who feel sorry for me. I don’t know which is worse, to ignore the facts or feel sorry for one and be pitiful. And I also want to hear something from their lives!
Then there are those, who slowly steal themselves out of my life, who are getting in touch less and less. They are also probably afraid that they might see something they can’t handle. Quite often they are busy with their own lives, with children, building houses, jobs and much more. I just find it sad that they feel bad about it. They report more and more seldom, until at some point the period is too long, and a “hello, how are you” would be weird. I don’t know how I would behave in such a situation. In any case I can say that I can understand a stay away, and I am also happy about a contact after a long time.
I admit it’s not easy dealing with me now either. I also have to treat the disease and I can’t ignore it, but I don’t want to talk about my own complaints all the time. I don’t want a meeting to become a tourture for my friends. However, if I am invited to cave climbing and am not even asked how I feel, then I doubt such an invitation. After all, my whole life is around this strange disease now.
Then there are people with whom it just works. I can cry, complain about my difficulties, but we can also laugh, watch a funny movie or music videos on YouTube. It works weightlessly and people who just can deal with me. I actually want to be treated normally, because my personality hasn’t changed. I may break out crying sometimes, but I can still be asked anything.
However, it hurts to see people staying away, as if I was leprous or they dealing with me as if I was weak from the concept. The fact is that I also adjust to each person individually, because people are different, so as not to overwhelm many people, I keep quiet about many things. This means that an encounter is also work for me. That’s not true, that I, as the sick one, can simply let myself go, and the healthy person is supposed to riddle how to deal with me. I try to make a meeting as easy as possible for my friends or family members – as well as I can.