Does Anyone Look Like Me? Underdiagnosed and Underrepresented

Since I was a small child, I have always appreciated representation. I enjoy seeing myself represented on television, in adverts, and in literature. I think this is something I recognize and enjoy even more because in my early years it was all around me.

I was born in Jamaica and lived there for 7 years before my parents migrated to the United Kingdom. During that time, I was surrounded by people who looked like me. There were dark-skinned people in my society, on TV, in magazines. I never felt out of place.

I became more aware of racial differences as I got older and began to seek out those like me once it was no longer the norm, when I was living in a country where most people did not look like me and seeing people who did in adverts and on the television was rarer.

Where are all the people of color with narcolepsy?

I love diversity. You can see it in the range of music I listen to, the wide range of topics that interest me, and my international group of friends. I enjoy learning about different people, cultures, and places, and my life has been enriched by knowing so many different people. Whilst it has been easy to see elements of myself in the friends I have made with narcolepsy, I have not met many that look like me or who share my cultural background. Just like the online narcolepsy groups I've seen being female-heavy in attendance, I have also noticed that there are not many brown or black people visible in these settings.

Talking with a fellow black narcoleptic, we asked ourselves: "Where are all the people with narcolepsy that are also people of colour? Is it that narcolepsy is a predominantly white disease?"

Culture may play a role in underdiagnosis

Do we see a smaller number of brown and black people in narcolepsy groups because the disease disproportionately affects white people more so than their counterparts? Is it due to brown and black people not seeking diagnosis? Is narcolepsy more genetic than environmental, and is that why we see more of it in some ethnic groups than others?

We did not have the answers to the questions above. My sister takes the viewpoint that it perhaps is not race-based but personality-based as to who is more or less likely to join a support group or attend a conference. That still begs the question, then, as to why white people seem more likely to join a support group than their counterparts.

I think that culture may play a role in people not being diagnosed. I have both African and Caribbean ancestry, and while both my parents are Christian and not deeply rooted in other forms of spirituality, I grew up hearing stories about duppy and the obeah man from when they were growing up.^1,2

The risk of being stigmatized by your community

Though my parents supported me seeking a diagnosis, I know people who have had harder times seeking help. It is harder when mentioning hallucinations may be viewed as a family curse or someone putting an obeah on you. Or, a person who is constantly falling asleep may be said to have dropsy, so it is not seen as a concern.

Perhaps black people living with the symptoms of narcolepsy undiagnosed are more likely to just accept them and not seek diagnosis in an attempt to not be seen as weak or lazy, or stand out negatively in a community that may not see the seriousness in what you are going through or think you don’t need medication to fix it – just hard work and prayer.

This is not to discount the many black and people of colour who do not think this way and are not diagnosed due to high level of misdiagnosis associated with narcolepsy in general. This is also not to suggest that white people may not face these same issues amongst their communities when seeking diagnosis.

More representation is needed for people of color

I do not have an answer as to why the number of black and other people of colour within narcolepsy circles that I have been engaged with in the last 2 decades is so low. I know that we exist; I am one of them and have met several in the last couple of years.

I do know that I don’t see many black people out there promoting narcolepsy or running its organizations. More well-known people with narcolepsy in the public eye would be great, and more diversity amongst those people would be even better. Awareness is always a positive, and seeing someone that has something rare that you also have creates a connection point, making them a little more like us.

I think that perhaps if there were more visual representation, maybe more ethnic people would see themselves and would be engaging more. Maybe, like the kid in me looking for someone who understands what I am going through that looks just like me, more people would reach out to someone they, too, could see themselves in.