Can Your Location Impact Your Experience With Narcolepsy?
Since being diagnosed with narcolepsy in 2018, my life has unfortunately been less than stable, but this experience offered me the opportunity to live in 3 different countries in the last 2 years.
Experiencing life with narcolepsy in 3 vastly different worlds has made me extremely curious about what this can mean for people with our condition.
To what extent does residence impact your personal experience with narcolepsy?
A world of experience in living with narcolepsy
From 2019 to November 2021, I lived in Portugal, Angola, and the United Kingdom. My experience in each has been vastly different and therefore affected my personal life in distinct ways.
Angola is situated on the west coast of Southern Africa, where I lived for almost 7 years of my adult life.
Narcolepsy in Angola is a condition that, from my experience, is almost entirely unknown to most of the population, including doctors. It is a country where narcolepsy is completely unrecognised; there are no sleep studies, which means you cannot be diagnosed with narcolepsy and, consequently, there is no access to medication either.
I was living in Angola when I was diagnosed with narcolepsy, and I can see now that this probably contributed to my delay in accepting and understanding my condition. For the first 2 years after being diagnosed, the only people that had any knowledge about it were those closest to me. A society that is unaware and uninformed can often mean people with a condition like narcolepsy will face daily discrimination, ridicule, and belittlement.
While I lived there, I felt ashamed about my condition, and it wasn’t until I moved to Portugal that I was able to (finally) overcome this.
Moving to Portugal was somewhat of a mixed experience.
On the one hand, being in a different country helped me come to terms with my condition and feel comfortable enough to share it with the world through a blog. Also, I was relieved and happy to be living somewhere with access to medical support and medication.
Having said that, I was surprised to discover that awareness in Portugal is almost as nonexistent as Angola’s, and there is still a great amount of evident stigma. Whilst having close access to medication was great, the options are extremely limited. This significantly decreases the chances of finding the right treatment and the likelihood of functioning well in life.
In addition to these challenges, there was another even greater: lack of financial support and exorbitant prices of medications. Unsurprisingly, I can imagine that there are many people simply unable to afford their treatment.
London was my home for most of my childhood, teen years, and a few of my adult years. However, at the age of 24, I decided to leave; so when I returned at the age of 30, I felt like I was going back home.
But what I found when I returned was very different to the memories I held of my time there.
Although the UK holds the most awareness and treatment options compared to the rest, it presents its own difficulties. Firstly, I was shocked to learn that my sleep study conducted in Portugal was not valid in the United Kingdom, which meant that I would have 2 options: 1) wait 6-8 months for a spinal tap, or 2) wait 12-18 months for a sleep study.
In November 2020, I was added to the waiting list for a sleep study, and as I write in March 2022, I am still waiting. That is not what I had expected from one of the most developed nations in the world.
Being grateful for what I have, wherever I am
These different experiences have shown me what tremendous significance our location has in determining our experience living with narcolepsy. Unfortunately, as it continues to be rare and unknown, I question if there is a country in the world that could offer an easy, uncomplicated experience. Whether it’s lack of medication, awareness, or financial or medical support, it seems that the one thing they all have in common is that they are all lacking.
The one thing that I have learned with these contrasting experiences is the ability to adapt to any situation, and simply be grateful for the things I do have, wherever I am.
Where are you in your narcolepsy diagnosis journey?