Managing Guilt and Privilege as a Narcolepsy Advocate
For anyone who has read my work in the past, you may be aware that I’ve been taking a new medication for about 3.5 years. Xyrem has allowed me to finally sleep in a way I wasn’t even aware I was missing. It has changed my life for the better.
But what does a narcolepsy advocate do once their symptoms are mostly controlled?
Starting out in the narcolepsy community
When I started my journey into connecting with others with narcolepsy online, I was at a point where I was managing. However, I was not thriving by any means. I was just finishing up my university degree, where I spent half the time sleeping through lectures and tutorials. I barely scraped through to complete my assessments. At times I had part-time jobs, but they completely sapped my energy and left me unable to do anything else.
I was doing my best to portray an image of “normalcy”, and I even convinced myself some of the time. Sadly, this was mostly due to the fact that I no longer remembered how normal was even supposed to feel.
Connection came easy
Online, I connected to others with narcolepsy easily. My symptoms were always close to “textbook” in their expression, so I understood how others felt. The knowledge I’d acquired over plenty of research also came in handy to help educate others. Many people never have the ins and outs of their condition adequately explained so this closed a significant gap.
I was still a very awkward person, but being well-versed on the subject of narcolepsy made me feel good about being "known" in the group. I felt it gave me a sense of purpose, and I started to feel less alone.
The Xyrem gap
Over time, through different projects, my efforts to create community through narcolepsy social media paid off. I met plenty of lovely humans from across the globe, and we each bonded over our similar experiences.
However, one factor sometimes left me feeling like I wasn’t on a level playing field. From the very moment I found out about Xyrem (and how it wasn’t available in Australia at the time) I couldn’t stop ranting about the injustice to anyone who would listen. How could this medication exist that tackles the issues of narcolepsy at a deeper level, and had been used safely in other countries for decades, and yet patients in Australia had no hope of even trying it.
Trying hard to avoid comparison
I was sometimes overcome with jealousy when hearing others talk about what they were able to achieve. However, I had to keep reminding myself that there was no point in comparing my own situation to those people. They were able to get a decent amount of deep sleep each night, I wasn't. While we shared many of the same symptoms, in our everyday experiences, we were almost too different to group together at all.
At my most petty, it seemed like these people were somehow cheating. How could they label themselves as a “person with narcolepsy” when they no longer experienced the worst of our symptoms and struggles?
Can I still represent my community?
These days, I worry that this is how others might see me. I always had one big goal with my social media presence, website, and general advocacy content. I wanted to present a balanced and realistic view into the life of a person with narcolepsy. And yet, while I definitely still have the diagnosis and feel the effects of narcolepsy every day, its impact on my life pales in comparison to my past experience. It’s the difference between having an annoying runny nose and having a flu where you can barely get out of bed.
Medication access issues
Another added complication in this situation is that Xyrem is still very difficult to access in Australia. It is incredibly expensive, far out of the range of what the average person could afford on a consistent basis. The monthly cost of my Xyrem almost matched my rent in Sydney - one of the most expensive property markets in the world.
Even for those who have the money, things can be difficult. Navigating the complex system in order to find the right doctors, with the knowledge to access it, is another hurdle to jump. All that on top of the herculean effort of simply getting through each day.
Using my skills and experience
I worry many of my experiences are no longer representative of the narcolepsy community at large. And yet, I did have a very difficult time with narcolepsy for over a decade. I still experience many of the same symptoms (although noticeably reduced). I still feel a big responsibility to continue my work as an advocate, even with my small platform.
My joy in being an advocate stems from putting my experiences into words that others can easily relate to. I don’t mind sharing my more vulnerable side to the world, opening up dialogues about narcolepsy and mental health. My brain is naturally curious about understanding specific details, which makes it easy for me to retain and share new information I learn about narcolepsy.
Using my privilege for good?
I'm privileged in multiple ways. The fact is, I'm a young white woman from a supportive middle-class family. I’m aware that this has always made my experience of narcolepsy easier than it is for others. With the benefit of support and privilege behind me, I spend less energy on simply living my daily life. I feel an obligation to use my extra energy to lift the voices of others who simply don’t have that time or energy to spare.
So while I have been struggling to balance all of these worries, it’s all because I only want to continue to be an authentic and useful voice in the narcolepsy community. I don’t want to portray myself as simply “better able to cope” or “more motivated” than others. It’s mostly due to my medication and the lucky fact that it works well for me.
Maintaining transparency and avoiding unfair comparisons
This is why you’ll often see some disclaimer-adjacent statements in my writing. I have to address the fact that I use Xyrem and have a very supportive family behind me, among other things. I just never want others to feel that they are falling behind due to a personal failing, when it may simply be that they don’t have the same opportunities that I have been afforded.
It’s completely unfair, and I strongly believe that more needs to be done to level the playing field. Everyone deserves access to life-changing treatments and support. But as it stands today, I figure the least I can do is be 100% transparent with where I'm at.
Do you feel that your doctor understands narcolepsy?