"Hypersomnia is a real condition, not laziness," he said.
SLEEP DISORDER - FROM THE HEART
Nathalie (38) candidly shares her experiences with hypersomnia, a debilitating sleep disorder that profoundly affects her life. She talks about her daily struggles, her hopes for improved treatments and her plea for greater understanding.
When did you begin to notice the symptoms of hypersomnia?
I can't remember ever feeling anything other than tired. It seems to have always been a part of me, something I consider normal. I was always someone who slept a lot and fell asleep without difficulty. When I felt tired, I could just lie down and fall asleep within minutes.
How does this sleep disorder affect your daily life?
Due to chronic fatigue and lack of concentration, I often have to drag myself through the day. Simple, everyday tasks can feel overwhelming and are often already too much for me. I feel obligated to do them, but often have to put them off because I can't. I have had to resign myself to this but it is still difficult to accept that I cannot function in the same way as others. Always having to cancel plans because I am too tired and want to crawl into my bed is very discouraging.
I also functioned more slowly on the work front, which led to the termination of some collaborations. I have always found this very unfortunate because I was happy to work. In this society, the concept of "time is money" is more important than the wellbeing and well-being of the employee, so unfortunately there is no place for people suffering from a condition.
"I hope for better treatment so I can return to work and resume my social life without feeling exhausted."
What support have you received in dealing with your illness?
My family, my sister and friends support me tremendously. They accept the situation and know me well enough to understand how I am. I am also grateful to my attending physician, psychiatrist Dr. Buntinx. He, unlike others, did take my symptoms seriously and believed in me. It made me immensely happy to finally receive recognition. I wasn't just sucking my problems out of my thumb; there was actually more to it.
What are your hopes and expectations for the future?
I once participated in a sleep study on hypersomnia, where I was prescribed medication. These medications helped me function better during the day. Still, I am hoping for improved treatment to alleviate or even remedy my symptoms so that I can truly feel energized and fit. Maybe I could even go back to work and resume my social life. Just being able to do fun things without going over my limits would already have a great impact on my life.
Do you think it's important for hypersomnia to get more attention?
Awareness and education is hugely important. It is crucial to get recognition so that people understand that hypersomnia is a real condition and not a matter of laziness. Look beyond your nose. Individuals with hypersomnia need support and understanding rather than being judged.
What would you like to pass along to peers?
Try to make the best of your life, even if it is different than you had hoped. You are not alone and you are doing well your way, despite the difficulties! And also very important: don't feel guilty, after all, you can't do anything about it.
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