Living With Narcolepsy in a Developing Country and Its Implications
Having grown up for most of my life in the United Kingdom, where the common colour of the sky is grey and taking vitamin D daily is standard practise, I was highly unprepared for the stifling heat that came with suddenly relocating to a tropical atmosphere.
At the age of 24 years old, I made a life-altering decision to finally explore my roots and join my 2 sisters in Luanda, Angola (located on the western coast of Southern Africa).
I could not have predicted that years later, I would discover that I suffered from an incurable chronic illness in a country with absolutely no medical resources to diagnose or treat the said condition.
Realizing my sleepiness was not normal
From the very first day I arrived, the feeling of lightheadedness and persistent drowsiness evaded my senses. On my very first day at a new job, my body involuntarily shut down as I sat right in front of my new boss. I was as shocked as she was but dismissed it as simply being tired from the long 8-hour flight the day before.
Unfortunately, this would prove to be far from the truth.
Aside from the heat, the social scene in Luanda was something I was not accustomed to. The majority of nights out would only start at 2 a.m. and come to an end around 8 in the morning.
Perhaps it was due to this lifestyle, in addition to the unfamiliar climate, that it would take me 4 years to realize that my sleepiness was not normal. It was only at the age of 28 that I was finally diagnosed as having narcolepsy with cataplexy.
Searching for a sleep specialist
I searched everywhere in Luanda for a sleep specialist or neurologist to help me confirm what I had already established to be the truth upon discovering the term “narcolepsy” on internet sites after much research.
I managed to book an appointment in one of the best hospitals in Luanda, only to have to explain to the neurologist all about narcolepsy. I knew from then that I wouldn’t find the help I needed in Angola.
Support from my family and employer
Fortunately for me, my family had the financial means to afford me an aeroplane ticket to Portugal, and I went to stay with my mum for a few weeks while I awaited my sleep studies.
Moreover, I had only very recently been hired to work under someone aware of my “problem” and extremely supportive. I was allowed to take off 3 weeks of medical paid leave after having only been in the company for 1 month.
Diagnosed but facing new challenges
Being diagnosed, whilst a relief, was far from being a cure, and I don’t think I was prepared for the added difficulties of living in a developing country.
Getting my medication
The biggest hurdle was in obtaining the medication itself. My medication had to come from Portugal, as the medication I needed was non-existent in Angola, and therefore my doctor luckily agreed to provide me with batches every 3 months.
However, since post to Angola wasn’t the most reliable process, the only sure way for the medication to reach me was for my mum to pick it up at the pharmacy, wait for someone we trusted to fly to Angola, where I would then meet them to collect it. It was an extremely frustrating and draining process, but it was the only one I had.
Lack of medical support and guidance
The other major problem that I faced was one I didn’t even realize the importance of until it led me down a road that became dangerously detrimental to my well-being. The lack of medical support and guidance, especially when newly diagnosed, is vital to learning how to deal with the condition itself but, most importantly, understanding how to have a healthy relationship with medication.
Lessons I learned
Almost 2 years after my diagnosis, I left Angola, but it undeniably taught me many things, but the most important lessons I took away from this experience were:
- It is so important to understand the condition you have so that you can understand your own actions and reactions. It may explain more than you imagine.
- Medical support and guidance are fundamental to having a healthy introduction to the condition. While learning alone may not impact you as negatively as it did me, the journey will be more difficult than it has to be.
- Having a community of people who share your pain is essential! Navigating it alone can be damaging to your mental health. Don’t ever think that you are alone; you are not.
Do you feel that your doctor understands narcolepsy?