Should you talk about it? And if so, how? These questions are not always easy and yet are constantly present, but differently depending on the visibility of your chronic disease and the place it takes in your life. But it is not because the disease is visible that it is easy to explain, especially when others only see it at a given moment, which is not necessarily representative of its ups and downs.
Should you talk about it?
First question: Should you talk about it? Personally, I think so, especially when the disease has real consequences on your daily life. It goes without saying that, if the disease is not visible because it is well treated or in remission, you have the luxury of not talking about it. Of course, it does not prevent you from doing so. But you have a choice. The choice to pass for someone who is in good health, who has not had the difficult experience of partially or totally losing control of his or her body at some point, for a longer or shorter period of time. The choice to be given a certain normality which is often denied to us if we start talking about illness, treatments, hospital. At the end of the gap year that I took after my A-level, I went through a phase of quasi-remission during which I almost never spoke about the disease to the new people I met. It was a great relief not to be directly identified with the disease and/or the disability it created. I felt again as if I was being treated “normally”. So, when you are lucky enough not to have to talk about the disease, you can be completely in control of whether or not to talk about it. And not talking about it is not a lie, it is just a choice.
“The disease is not part of the others’ normality.”
Talking about the disease when it is visible
Nevertheless, I think that, when the disease takes up more space in your everyday life and manifests itself visibly, it is better to talk about it openly. Not to everyone, not as soon as you meet someone new. But after all these years of trying different communication strategies, I think that the people you meet regularly (colleagues, new friends, classmates, etc.) may need to know, for several reasons:
- Better understand the disease and its symptoms
- Identify the problems you are facing because of the disease and how to help you if necessary.
I’ve always found it legitimate that people I’m starting to spend more time with need to understand why I’m in a wheelchair most of the time, but can still walk… Talking about it doesn’t force me to go into the more specific details of the disease. But as others are not omniscient, they may need and want to understand the disease and its constraints, especially if they spend quite some time with you and if the disease you have is rare… It will then be necessary to repeat the name of the disease several times and generally they will forget the name. But this is not really what matters. The most important thing is that they understand how the disease can manifest itself and that they do not worry too much, when the symptom is impressive, but not serious. For example, when I lose my voice and start whispering when in a general weakened state, they ask me what the matter is or if I have a cold. No, it is just tiredness, but it is nothing serious, it will get better soon. Always say it’s not serious when it is the case, otherwise, others get scared. And after all, it is not really the effect you want to have.
Explaining with images
When you talk about your illness, I believe that you should never lose sight of the fact that the illness seems “normal” to you, especially if it has been several years already. But the disease is not part of the others’ normality. As such, it is sometimes necessary to explain again things that may seem obvious to you since they have been your daily routine for years, but which may not necessarily seem obvious to others. Even now, I sometimes have to take a moment to try to put myself in the shoes of someone who is not ill to remind myself of what will seem “normal” to him or her, and not to me. I need the person in front of me to understand what the problem is, how the illness affects me on a daily basis. But above all, I don’t need or want them to panic, feel sorry for me or infantilize me.
However, it is not always easy to talk to others about the disease. It is sometimes so difficult to put into words the daily reality of pain, suffering, fatigue and to explain it to people who do not know it or do not know it well, and especially who do not live it constantly. Sometimes, I have very heavy legs, like if they were full of lead or as if I had walked 10 hours straight, which cause severe pain. Describing the reality of the disease with pictures has always helped me to make others understand better what it is. The words we share are often insufficient to describe an experience of reality that is different for others and yourself. The same word will not have the same meaning depending on whether it is used by someone who is ill or well.
As in many areas, the key is HOW one communicates about the illness, so that it is clear, effective and understandable, but above all so that the disease does not seem so terrible.