Well built, with a bright smile on his face, you would never think when you meet him that Nicolas has been living for several years with epilepsy, a disease which he has learnt to cope with over the years, despite the more difficult phases. A very enlightening interview!
1) Who are you and what is your chronic disease?
My name is Nicolas, I am 28 years old. I am a project manager in a hotel where I manage events for groups. I have epilepsy. It started when I was 14 years old, without warning, from one day to the next. There are many forms of epilepsy. I have a form where I have tonic seizures, which are seizures with falls and convulsions. I also have absences, which are blackouts lasting for a few seconds. I’m on daily treatment, but that doesn’t stop me from having absences from time to time.
2) How does it affect your life?
I had to create a little routine for myself, the “medication routine”. With this disease, I am on a daily treatment, I take some medication in the mornings and evenings to limit the number of seizures and absences. This has an impact on my life, as I always have to plan my medication. I always have to make sure I have what I need, for example when I go away for a weekend. I have to plan ahead.
I also have to plan to get the medicines: When I try a new treatment, the neurologist at the hospital writes me a general prescription and then the general practitioner can write the prescriptions. As these are long-term treatments, the prescriptions last for six months, so there is some flexibility. But for one of my medicines, I have to go to the hospital pharmacy because it is not available anywhere else.
The absences happen mainly during the times when I am more tired or more stressed out, so I have to be more vigilant about what I can do or for example, when I go out in the evening.
I have to find the balance. When I don’t respect it, I know what I’m risking and what to expect in return: Compared to an average person, the risk is that I’ll have an absence or a seizure.
3) How did your family and friends deal with it or deal with it now?
It was a shock for my family. I had my first seizure in the UK, so I was very far from my parents. It was a disease I had never heard of before. I was 14 years old and found myself in an English hospital, a bit stressed out. After several weeks and a number of tests, we managed to find out what the disease was. In fact, we discovered it as a family because nobody knew about it. I was very lucky to be supported by my family in this ordeal. And they still support me today because there are still moments when it is not easy: morally or physically when I have crises or absences. But I know that they are there and that I can count on them if I need them. It’s good to know that some people support you.
As far as friends are concerned, it helps to sort things out: there are people who will understand, who will act as if nothing had happened and with whom things will go well. And there are people who will be afraid, who will not try to understand, who don’t care, who will say “You’re not like us, you have nothing to do with us”, who will walk away and cut us out of their lives. One advantage: you know who you can really trust and who you can’t. When you have epilepsy, this is very important. You have to know how to surround yourself with the right people in order to move forward.
“I take it one step at a time, and I’m proud when I’ve reached a stage despite the disease, to have succeeded in doing so. ” – Nicolas Ferré
4) What was, or is, the most difficult thing about the disease?
At the beginning of the disease, there is the phase of understanding, of simply understanding what is happening to you. You wonder what’s going on and what you have. And then you ask yourself:
– “Why me?”
The most difficult thing is acceptance, to say to yourself that yes, you are ill, that you have epilepsy. It’s accepting that you are like that, but continuing to move forward despite everything, without getting depressed, or shutting yourself up at home and being afraid of everything. You have to be able to keep opening up.
After the acceptance, there is the way you talk about it. It’s an illness that’s not easy to tell others about, because you can’t see it. People who pass you in the street are not going to say:
– “Oh, he has epilepsy.”
They don’t know about it.
When the disease is not visible, there is always the question of daring to talk about it, then when to talk about it, how to talk about it, with whom, at what time. Epilepsy is still a very poorly understood disease. There are therefore a number of questions that need to be answered. The way of approaching the subject is not the same for each person. People’s reactions are not the same, and you have to know how to adapt to people’s reactions, while still accepting the disease. You have to keep moving forward and talking about it, even if you are sometimes rejected because of it.
5) What are you most proud of having achieved despite your disease?
There are several things.
First of all, it is to have continued my studies and to have obtained a master’s degree and that today, the disease does not prevent me from advancing in my professional life and to be in a job that interests me, that I went to look for in spite of my epilepsy, and which is far from being a default job, an easy solution.
Then there are the testimonials: it’s about daring to talk about it, in writing, on TV, in magazines. This adds an internal strength, as if by talking about it, I am stronger than the disease. It makes other people discover the disease, and some of them thank me afterwards. Which always feels good. It’s like a return on investment.
6) Is there something you would have done differently?
There are often things where you think you would do them differently if you had to do them again. But in the end, I wouldn’t have done anything differently. I managed to move on despite the disease and that is one of the most important things for me.
7) What keeps you motivated?
A person who lives with a disease is stronger than someone who lives “without a disease” because they don’t go through the same trials, they don’t experience the same things. I am suffering from this disease, but I try to keep my head up so that I can move forward. I take it one step at a time, and I’m proud when I’ve reached a stage despite the disease, to have succeeded in doing so. I think that a person who is ill and succeeds feels more pride than an average person because it took a lot more effort and work. Every success is a bigger victory. It’s “Me: 1 – Illness: 0”. There was a time when I was doing my scores at the end of the day, and sometimes I would end up at 5 – 0. It feels good!
8) A lesson learned?
When you are ill, the smallest things can make a difference. Sometimes the little things you do for someone who is sick can do them a lot of good, even if it’s not much for the person doing it. I want to share a story about this: I was always told that as someone with epilepsy, I could not work with children because of the risk of seizures. One of my cousins, who knew about my epilepsy, chose to trust me to accompany him to a summer camp with primary school children. I had a seizure in front of them and went to rest. My cousin explained to the children what had happened and when I came back, all the children jumped into my arms. It wasn’t a big deal for them, but it was for me. When it’s hard, I often think about that moment to keep fighting. In general, when I have a difficult time with the disease, it helps me to think about the people who love me and to decide to keep fighting for them.
9) A word of advice?
Talking about the disease is to be stronger than it because you dare to talk about it. Talking about the disease can only make you move forward!
“When you are ill, the smallest things can make a difference.” – Nicolas Ferré
10) One last word for the end ?
I would give one piece of advice: If you have a disease, tell yourself that it is up to you to choose: If you want it to be stronger than you, then you will only “suffer” because of it. But if you want to prove to the disease, that you can be stronger than it, that will only help you to progress.
Picture by Nicolas Ferré