Most of us have fallen asleep during a film, while reading or during an online meeting. But imagine a constant struggle to stay awake in the laboratory, no matter how much sleep you have had.
Welcome to my life as a young scientist living with narcolepsy, a chronic neurological disorder. It is caused by a lack of orexin, a neuro-transmitter that is important for sleep–wake regulation. I’m sleepy all day, and might nod off in weird situations. Recently, for example, I fell asleep in my lab while only sitting down for an instant to adjust the settings of the mass spectrometer.
I also experience cataplexy — a condition in which emotions, especially laughing, can cause my muscles to become paralysed while I remain fully conscious. This might result in full-body paralysis and collapse that can last for several minutes. My other symptoms include sleep paralysis, which means being unable to move when waking up or falling asleep, and which might be accompanied by hallucinations; automatic behaviour, in which your body continues an activity while your brain is asleep; and disrupted night-time sleep.
I have been showing symptoms of narcolepsy since the beginning of secondary school, with a gradual worsening over time. I was officially diagnosed during my bachelor’s degree in 2015. Such a long delay in diagnosis is not uncommon for narcolepsy. Unfortunately, my symptoms deteriorated in early 2018, while I was finishing my master’s thesis and starting a PhD in the same group. My closest colleagues knew about my condition but appreciated my competence and were always a great support.
However, I soon realized how challenging and exhausting the PhD was going to be. I could not compete with other researchers in the hours I could work, and often failed to stay awake. I was constantly worried about being judged for falling asleep or being considered lazy by collaborators and other scientists in the lab. I was scared to go home at the end of the day because I often lost control over my emotions as soon as I left, which resulted in uncontrollable cataplexy attacks. This often put me in dangerous situations in which I fell to the ground in public and struggled to get up again.
Acceptance and accommodation
Although having narcolepsy was less than ideal during my undergraduate studies, it made doing a PhD much harder. The shift from attending lectures to spending most of my time working in the lab, as well as teaching, created more of a challenge. I realized that I had to accept narcolepsy as an incurable dis-ability, respect my limits and take care of myself. Once I started to live with it instead of fighting it, things started to improve.
I halved my working hours with the support of my principal investigator, who also agreed to flexible hours for desk work and even organized a mattress for naps in the office.
Our research is about the discovery in breath of biomarkers for respiratory diseases. I was often taking measurements directly with the children in our study, which made it possible for me to keep on doing my job, because there was always a lot of action and not so much monotonous work. I adapted my hours according to the study participants’ schedules, but stopped working stretches of more than 3 hours straight. I am now working on reading and writing papers, and my dissertation.
I’ve had very little success with medications for my condition, but since 2020 I have had an assistance dog, called Yaska, who makes my life easier and, especially, safer. Her training means she can warn me before sleep attacks happen, she keeps me awake during meetings or presentations by interacting with me, and she wakes me up at the right train stations. Her presence significantly reduces cataplexy attacks in public because I completely focus on her, which keeps my emotions under control.
Breaking the silence
A key step for me was breaking the taboo about chronic conditions and disability in academia. Without opening up about narcolepsy and communicating my specific needs, I would have been forced to stop my PhD altogether. The constant exceeding of my limits and the associated exhaustion not only resulted in an increase in the narcolepsy symptoms, but also caused physical symptoms such as nausea, headaches and dizziness, which would eventually have become unbearable. Still, it took a lot of courage to be completely transparent about my struggles, because I feared losing my reputation.
Other researchers mostly reacted positively, and I even received respect. Yet there were also a few negative responses. One person told me that I simply couldn’t do a PhD under these circumstances because a PhD requires working overtime. With increasing support, I started to see some unique and good sides of my condition for the first time. I am used to working hard and fighting to reach my goals. During the reduced, but highly focused, hours I’m working, I am more productive because there is no time to waste. I can prove that I’m not incapable and I remain a valuable team member despite my condition and its associated obstacles. Most importantly, I learnt that it is crucial to educate people about narcolepsy and the struggles of living with a chronic illness, and that it might require some tailored accommodations to reach one’s full potential.
I am now almost at the end of my PhD. Sometimes I still want to give up my career, but my main motivation is a passion for science and the hope that our research will one day change the lives of patients. To achieve this, I will keep on doing my best, taking one step at a time, and I am eager to see what the future holds for me.
By sharing my story, I want to raise awareness of disabilities, invisible illnesses and psychological problems in science and academia. I hope that my story will encourage others to pursue the career of their dreams despite all the obstacles they are facing.
The author declares no competing interests.