What comes to mind when you hear «Time for people to realise that you are ill»?

The first thing I think of, is that people don’t know what PH is. Furthermore, many symptoms are different from patient to patient.
So our disease becomes anonymous…
I always remember a famous quote: «The one who sees the faces, doesn’t see the hearts». Some symptoms are visible, others are not. We have to deal with this ambivalence and with this paradox. Because we are sick, we are aware of our limitations, but other people don’t, and expect us to do things we cannot do or we cannot achieve. So we feel many times in a duality between how we appear to be and how we actually are, or between our desires and what we can achieve.
How did people react when they heard about your illness? Any specific positive/negative/surprising reactions?

Since nobody knows what the disease is, no-one is aware of it. When I talk about PH, it sounds to people like I am talking about the flu. When my doctor initially told me that I had PH, I only realised that this could be a serious disease when she said I had to go to France to perform some medical exams. So if, I as a sick person, had never heard about PH, we can’t expect common people to have heard of it either. Talking about PH is completely different from talking about cancer and people also react in a different way. I remember when I started my treatments with inhalations, people felt embarrassed by my presence…I didn’t know why. They possibly thought I was invading their privacy by turning the room into a hospital room. They just didn’t want me near them. But in general, I have always been well treated. In the beginning, in some pubs, I had to charge my treatment device, and I was not always allowed to do that. In my daily routine, I don’t have major problems; I think people treat me well!

How difficult was it for your family and friends to accept your illness?

I think it wasn’t that difficult to accept the disease because finally I had a name for my symptoms. Furthermore, when you have something explaining your symptoms, it means you aren’t crazy! It was difficult to accept that I have a chronic disease, which is fatal, and to accept that I will probably die earlier than other people. I believe that in the beginning, this was not easy for my parents and for my brother. He is a doctor and he knew about the disease because he started to investigate it. We do not know what happens tomorrow and everyone will tell you this. We only know that the situation that arises when you celebrate Christmas with your family for maybe the last time, that is not a normal situation. No one is immune to this. I think my family managed to deal with my disease the best way they could. Like any family with relatives living with a terminal illnesses. My quality of life was the same due to all the support of my family and colleagues, because I’m still working… Their support has made dealing with the disease a little bit easier!

How did/do you tell people that you are ill?

I usually don’t tell people I’m sick. My friends know I’m sick because I tell them that I have a health problem. We always find ways to face problems. In the beginning I had to use a wheelchair during study visits with my students. My colleagues ask them to push my wheelchair or to hold my bag. I never need to tell people I’m sick, so this question is not applicable, because everyone in my workplace has facilitated me when they became aware of my disease. Thereafter, I was able to deal with the situation. We use to talk about any changes in my therapeutics, but it was in a very general way, not specific. I don’t need to tell people. I never thought about that actually.

Can you think of a specific example when this affected you?

The disease affects me daily since it affects the way I see the present and the future. It affected me in my professional career since I realised I didn’t know how long I would survive with this illness. Suddenly I was in a limbo, because I searched for information on internet. There I found that I will live for five years. Seventeen years have already passed since my diagnosis and I’m still here, right?! I face the same routines as diabetes or other chronic patients: I take my medicines, I go to the hospital for updates on new medications or to have my appointments and I’m aware that today I am fine and tomorrow I may not be so fine. Like Americans would say: We have one week or one day in the sofa! But for other people, this is difficult to manage – to realise that despite the fact that we look healthy, we can’t do the same things they can, because we get tired doing simple things like dressing or climb steps. It’s a Russian roulette. So I think my life have been ok up to now according to what is expectable. It for sure exceeded the expectations I had seventeen years ago. I think I am achieving my goals. On a professional level, I had to make options according to my diagnosis. At first I didn’t know if I could keep working or have an active life. At the moment I am able to teach and for that I thank the leadership at my school. I also thank my doctors at the hospital for giving me the possibility to have access to medications that allow me have an active life…