What other people tell us… Sometimes we want to laugh about it. Because it can be really funny. But sometimes we also want to cry when we hear it. Because it reminds us of the reality of the chronic disease. But sometimes also because, under the guise of helping us and minimising the difficulties of our daily life, what they tell us denigrates the very reality of our illness and its hardships. And that is even worse.
1. How are you?
– Am I allowed to give the real answer: Bad? Or will it scare you? Should I stick to the diplomatic “I’m fine” or even “good”? Will you be able to hear me if I tell you “bad”? And do I want to hear myself say “I am feeling bad”?
I hated this question when I first got sick because I felt so bad compared to before. And I didn’t like being reminded of that every time I was asked if I was okay. Because I was not doing well.
With time, I learned to answer honestly to those who could really hear the answer. And for the others, I am more or less frank depending on my mood on that day. The question has become easier to hear because I am more accepting of the disease and its hazards, I accept that I am not well when I am not well indeed.
2. There is worse!
– Yes, of course, there is always worse. But there is always better too.
Strangely enough, I have only ever heard this from healthy people. It’s as if other people with a disease tacitly know that an illness is not always what it seems, that it can be more painful than it seems at first sight and that, overall, having an illness is not funny every day. So, of course, there is worse. But let me be the judge of how difficult my disease is, on a daily basis and over time. I don’t want to be told what my attitude towards it should be. I know there is worse. I am aware of how lucky I am, because yes, it could have been worse: being in a wheelchair all the time, having a degenerative disease, being dead (well, I admit it’s a bit extreme, but it’s hard to imagine anything worse). But the comparison game is a dangerous one because there is always better as well, people who don’t have a disease, who don’t have as many limitations. Comparing ourselves to others, especially with a chronic disease, is a sterile and frustrating exercise. Who better than us, chronically ill people, could understand that what others see and what we experience on a daily basis can differ greatly? Others don’t see the weekends in bed to recover, the hospital stays, the side effects, etc. They don’t see the symptoms that we have to deal with. They don’t see the symptoms that we do our best to hide. So they should not try to comfort us by telling us that there is worse. The moments when suffering and pain prevail are no less painful because we know that some people are in worse situations. I prefer to compare the different phases of my own disease because it is a personal experience, which I can compare with full knowledge of the facts. And I can say today: “There have been worse phases, but there have also been better ones”.
3. Here is your thing!
– Actually, it’s a wheelchair…
I never quite understood why some people couldn’t call the wheelchair by its name. Is it out of discretion? Embarrassment? I sometimes wondered if it was because of the length of the word in French, as it rarely happens to me in English or German, languages in which the word “fauteuil roulant” is shorter (“wheelchair” and “Rollstuhl”). But it is still quite mysterious… Calling my wheelchair a “thing” is not going to change the fact that I need one. And it’s not a dirty word, so don’t be shy about using it.
4. Let the disabled through!
Honestly, this one is hard to answer. It’s always a surprise and it always hurts. Am I just a “disabled person” in the eyes of this person? Are all disabled people reduced to “disabled”? Are they not, above all, men and women like any other? There is a definitive connotation to the term “disabled”. What hurts is that it reduces us to a box, a label: the “disabled”.
5. Good luck! It must be hard!
– Are you implying that I have a shitty life? Well, no, actually… Surprise, surprise. Who would have thought it?
It’s not always easy to have a chronic disease. It is often hard and sometimes painful. But that doesn’t mean that my life isn’t worth living and that I need so much courage to live it. I think I appreciate what I do every day even more so because I don’t take it for granted. I have learned how precious and uncertain life is. So, I enjoy each day to the fullest.
What are some of the sentences you can’t stand since you have a chronic disease? Why or why not?