Lionel (24) has sickle cell disease. He lives in Rotterdam and studies graphic design. In addition, he’s an artist and has launched his own ‘Jazz cake’ brand.

When where you diagnosed with sickle cell disease?

About three months after my birth. I wouldn’t stop crying and my mum didn’t know what was going on. She didn’t know anything about the disease. The only thing she knew was that she was a carrier. Blood tests showed that I had the disease. My brothers and sisters were also tested for carrier status, but I’m the only one who got the full load. As a toddler, I was regularly admitted and I slept very poorly. My mother often had to lift me up to calm me down and distract me from the pain. She was scared to take me to the hospital because doctors at that time, knew very little about sickle cell disease. My mother cried a lot of tears over me and my entire family couldn’t sleep because I was always crying.

What are your first memories of the disease?

When I was four, I was admitted to hospital. I had no idea what was going, but I can remember that I was in a lot of pain. I remember also being admitted when I was around eight, that really was a nightmare. I was taken to hospital in an ambulance. That was a huge shock for my mother and brother. I had severe abdominal pains, moving was difficult and it got worse and worse. They wired my body up and it seemed as if I was about to meet my maker, it was that bad.

When did you start being treated in the Erasmus MC hospital?

The last time I was in Maasstad hospital, was two years ago. That was for a cerebral infarction caused by the sickle cell disease. I was referred to the sickle cell centre of the Erasmus MC hospital because they can offer better treatment here.

Did you know that you can suffer a cerebral infarction as a result of sickle cell disease?

No, that came as a huge surprise. I woke up in the middle of the night and noticed that the whole room was spinning when I moved my head. It was as if there was a delay in the visual registration in my brain, which made me very dizzy. I thought it was just a headache and that I could sleep it off but the next morning, the spinning was just as bad. I couldn’t walk straight and had to hold on to things to prevent myself from stumbling over. I threw up twice that day. The next morning, it was still there and my back started to hurt as well. First, I called the GP but he was on holiday and then I immediately called the Maasstad hospital because they have my file. A few days later, the senior consultant told me that I had had a cerebral infarction. That came as quite a shock to me. From that moment on, I realised that I really wanted to know more about the disease.

Are you fully recovered now, two years after the cerebral infarction?

Yes, I’ve received physiotherapy and talked to a psychologist. I wanted this myself because I had a bit of a shock. That definitely has made a difference. I’m glad that through physiotherapy, I’ve succeeded to walk straight again and regained some routine.

In the past, did your friends know about your illness?

When at school, I didn’t always like to talk about it. It’s an invisible disease and easy to hide. On the one hand, that’s an advantage but on the other, you do need to tell people about it. Like my friends, who mean a great deal to me. They understand and show consideration for me when I’m tired or don’t feel so well. I do worry sometimes about how they will react. They’ve never experienced me having a crisis but they do come to visit me in hospital. In general, I’m selective about who to tell. I don’t always look forward to it, as they may think that I’m sad or faking it. Or they will see me differently and I find that annoying as well. I just want to be normal and be and do like all the others. That made me kind of sad when I was little. I would see the other children playing and running without getting tired and I was just a spectator.

Did you do a lot of sports in the past?

Yes, in the first year of pre-vocational secondary education, my PE teacher was also my form teacher. He took my condition into account and that enabled me to achieve the occasional pass. I did show an effort, because I really didn’t want others to see me as ‘weak’. I’m too hard on myself sometimes. I want to prove myself, not just to others but also to myself: ‘I CAN do it!’

You’re 24. How do feel about your condition now?

I’m someone who does a lot of things myself, also for my career. I’ve been working as a freelance designer for years, even though I’m still studying. I look at my abilities and skills. My mother often says: ‘you’re quite strong for someone with sickle cell’. I have a lot of willpower, that keeps me going when my body’s starting to give up on me. I sometimes hear others say: ‘Aren’t you overdoing it?’ But my energy levels are high, probably because I have a blood transfusion every eight weeks.

How do you obtain information about sickle cell?

I Google developments around the disease and read people’s experiences and look up useful information about health, food and relationships.

And what about relationships? Would you tell a partner right away?

I have been giving it a lot of thought. I’m single now but the big question is: when is the right time to tell your date that you have this disease? I think it’s better to tell it before you actually start a relationship. Then she knows what she is dealing with and what goes on in my body when something goes wrong. But for a long time, I’ve been afraid of bringing it up, out of fear that they may not be interested in me. That definitely has damaged me during certain periods of my life. From the outside, I look like a normal person. Telling about my situation feels like a superhero telling his real identity. It’s a painful secret that you always carry with you.

Should a future partner from the same community be tested for carrier status?

Phew, that’s a tough one. I wouldn’t want my child to experience the same thing. I wouldn’t wish it on anyone, not even my worst enemy. It’s just an awful disease. The pain is bad and I wouldn’t be able to see my child suffer the same pain. This at the same time makes me very critical when I look for a partner. One condition is that she’s completely healthy and that also means she must be a non-smoker.

How does it affect your everyday life? I mean, do you ever go out?

I don’t like nightclubs but I do like the pub and shopping. I try and avoid crowds. I don’t drink alcohol and I don’t smoke. There will always be people who laugh at you because you don’t participate in life. But I dare to stand up for myself, I am who I am, take it or leave it. I talked a lot about it with my mother. On the one hand, I want to see and experience how other people live but on the other, I don’t feel the need to do what they do. When I’m not busy studying, I’m busy working on my own projects, such as a T-shirt line. Being an outsider can be lonely sometimes, but my mother says that I will reap the benefits later. She thinks I’m doing well and that I absolutely don’t have to be like others.

Do you feel that you’ve achieved your goals?

Up to now, yes but I dream big and I always want to go one step further. Every day, I think about what I will be doing tomorrow and what I will accomplish. I live my life around the disease. My imagination and creativity also help me to step away from reality every now and then. I shut myself off from all the negative news around me. It depresses me which in its turn makes me sick.

Your mother is very important in your life.

I love both my parents a lot but they’re divorced and I’ve been raised mainly by my mother. She was always the first person to comfort me when I was in pain. She often spent the entire night at the hospital. We’ve got a very strong emotional bond. I can always talk to my mother about my illness. She may not understand everything that’s going on, but enough to look after me and give me tips. Also when it comes to feelings and emotions. She doesn’t like it when I feel lonely. Loneliness and sickle cell disease often go together, because you know you’re different. I sometimes have to say no to things that others can say yes to. You also start to worry about friendships or relationships and you hope that you will be understood. Because I’ve lived through more, I’ve grown up quicker. Sometimes, I want to share things with my peers but they just don’t understand how certain things work. They think of me as boring or as someone who thinks too much about things, prompting me to withdraw and feel lonely again.

Is there anything you want to add?

I often hear that sickle cell patients have difficulty finding a job. A future boss may think that you don’t do enough and be sick a lot. I know it’s difficult with sickle cell disease, both at school and at work. You’re stuck with it forever and it can strike unexpectedly. Even if you’re not in pain, you’ll be tired quicker. I have opted for creative study so that I can work for myself. You have lots of freedom; if you’re ill, you decide when you work. Being self-employed and a sickle cell patient is a good combination. I was once examined by a doctor to see if I would qualify for disability benefits but I didn’t qualify. And I’m fine with that. The work I do now requires no physical effort, because I mostly work from behind the computer.