Transcript
Hello everyone. My name is Rim, and I am from Algeria. I am a patient advocate and an ambassador for the national pulmonary hypertension association in Algeria, the only such association in North Africa. I live with pulmonary hypertension, specifically pulmonary veno-occlusive disease, or PVOD, a rare and complex form of pulmonary hypertension. I have been living with this disease since childhood.
Today, I want to talk to you about something that has taken me years to understand: you are more than your diagnosis. When you are diagnosed with a chronic, rare disease, your life can suddenly start revolving around it. There are appointments and symptoms, including breathlessness, also called shortness of breath, and severe fatigue, even when you are doing simple activities.
Sometimes there is dizziness, and one of the most difficult symptoms is losing consciousness, also called syncope. There are treatments, which can have many side effects, as well as tests and limitations. For me, physical limitations are particularly difficult. Sometimes, without even noticing, you start seeing yourself through your diagnosis: what the disease allows you to do, what it does not allow you to do, and what your future might look like because of it.
I know this feeling because I have lived it, and I still do. This is a chronic disease. But over the years, I have learnt that although pulmonary hypertension is part of my life, it is not the whole of my life. That is what I want to share with you today. I will start at the beginning, when everything changed.
Before my diagnosis, I was simply a child. I loved studying and playing. I was energetic, and I had the same kinds of dreams and plans that any child might have. Gradually, I started noticing that something was different. My heart would beat very quickly, and I became short of breath. I lived on the fifth floor, and even climbing the stairs to our flat could become incredibly difficult.
At the time, I did not understand what was happening to my body. Eventually, after medical investigations, I was diagnosed with pulmonary hypertension. I was lucky in that respect, because many patients are misdiagnosed for a long time. It can take years to get the right diagnosis. Further investigations into what was causing my pulmonary hypertension led to the more specific diagnosis of pulmonary veno-occlusive disease, or PVOD.
I was around 12 years old. When you receive a diagnosis like that at a young age, you do not necessarily understand everything it means, but you understand that something has changed. Suddenly, there are medical appointments and examinations, things you have to think about and things you have to be careful about. Slowly, the disease becomes part of your everyday life.
For me, one of the biggest challenges was learning to live with the fact that my body had changed without believing that I had become a different person. There is a difference between “I have a disease” and “I am my disease”. They are not the same thing. Of course, pulmonary hypertension affects what I can do. There are days when I have less energy and things that require more planning.
There are moments when I have to listen to my body and accept that I need to stop. That is important: we should not ignore our limitations just to prove that we are strong. But respecting your limits does not mean giving up on who you are. I am still a person with dreams, things I want to learn and create, people I want to help, and a future I want to build.
My diagnosis changed many things in my life, but it did not erase the person I was. Another lesson I have learnt is not to compare my journey with someone else’s. When you live with pulmonary hypertension, you may meet other patients who can do things you cannot do, or perhaps you can do things they cannot. It can be very easy to ask yourself, “Why can’t I be like them?”
Every patient has a different story, with different circumstances, symptoms, limitations and ways of coping. That is why I stopped trying to measure my life against someone else’s. Comparing yourself with someone who is healthy can be even harder. You may find yourself wanting to try the things they do. Some things may be possible, but there are others you cannot do because of your illness.
Instead, I started asking myself, “What can I do with the life I have?” Sometimes the answer is something big. Perhaps you have managed to go somewhere you have been wanting to go, and I think you probably know what I mean. Perhaps you have finished something you started, or simply got through a difficult day. That matters too. You do not have to constantly achieve something extraordinary to prove that your life has value.
I also had to learn that asking for help is not a weakness. When you live with a chronic disease for years, you can become very good at saying, “I’m fine.” You do not want to bother the people you love, or other people. You do not want pity. Sometimes you say it because you do not want people to worry, and sometimes because you want to feel normal and avoid being treated differently.
But there are moments when you need to say, “I need help,” and that is okay. You do not have to prove your strength by doing everything alone. It can take a long time to learn that. Sometimes strength means knowing when to stop or telling your family or friends that you are having a difficult day. Sometimes it means accepting support instead of feeling guilty about needing it.
I think this is something we should remind ourselves of more often. Needing help does not make you less independent, less capable or less valuable. It simply means that you are human. Everybody needs help sometimes, including people who are healthy. Another thing I want to talk about is finding something that belongs to you, beyond your illness.
For me, one of the things that helped me reconnect with myself was finding things outside my illness. Writing became one of them. I wrote a book called The Killer Friend, inspired by my experience of living with this rare disease. Writing gave me a way to express things that were sometimes difficult to say, even to the people closest to me.
Later, I became involved in patient advocacy. I began speaking about pulmonary hypertension and rare diseases, sharing the patient perspective and raising awareness. Today, I am an ambassador for the national association in Algeria, and I am involved in international rare disease and pulmonary hypertension communities, including in Jordan, the United States and the United Kingdom. I am also developing a digital health project dedicated to respiratory and rare diseases.
None of these things happened because I decided that being sick was somehow a positive thing. I did not choose this disease, but I realised that I could choose what I did with my experience. That distinction has been very important to me. I also want to say something very clearly: you do not have to turn your illness into something.
You do not have to become an advocate, write a book or inspire anyone. If your priority today is simply getting through the day, that is enough. If you need to rest, rest. If you need support, ask for it. Asking for support does not mean asking for pity. If you are having a difficult day, allow yourself to have that difficult day. Everybody can have difficult days, whether or not they have an illness.
Being strong does not mean pretending that everything is easy. Sometimes strength is simply continuing one day at a time. If someone living with pulmonary hypertension is watching this, I want to tell you something: please do not let your diagnosis become the only way you see yourself. You are still allowed to have dreams, and you are allowed to change your plans when your body needs you to.
You are allowed to have difficult days, to ask for help and to discover new parts of yourself along the way. Your life may look different from what you imagined before your diagnosis. Mine certainly does. But that does not mean your life has lost its meaning. If there is one thing I hope you take from my story, it is this: you are more than your diagnosis.
Pulmonary hypertension is part of my life. It has changed me and the way I see many things, but it does not define everything I am. Your diagnosis may be part of your story, but it does not have to write the whole story for you. You are still you, and your voice, your experience and your story still matter. Thank you so much for listening. I hope you have a good day.