The Struggle and Stigma of Narcolepsy Medications

As people with narcolepsy, most of us take some type of medication every day. They help us to live as close to “normal” as possible.

However, acquiring the medications we need to get by isn’t always as easy as it should be. It can also have a bigger impact on our lives than others might expect.

Accessing my medications was a problem

When I was first diagnosed with narcolepsy, I was shocked to find how highly regulated my new stimulant medication was. I'll admit it makes sense due to the nature of our meds (often with high abuse potential). Nevertheless, for a girl who found organisation next to impossible, accessing my medications was a frequent problem.

I’d often run out of meds, my script would have already expired, and it would take days to get a new one from the specialist. So I’d suffer with no medication until I got the script, only to find that the pharmacy had none in stock. Then I’d wait another couple of days before actually receiving it, and repeat that cycle every few months.

It was extremely frustrating because without that medication it was extremely hard for me to work. On top of this, the eternally groggy feeling often left me physically nauseous and emotionally drained.

New medication, new problems

A few years ago I decided to try a new medication. It immediately usurped my stimulants in terms of my regular pharmacy woes. The new medication worked amazingly for my symptoms, but it is not an “approved treatment” in Australia. My pharmacy has to have it ordered to Sydney specifically for me.

Because this complex process is not one that most pharmacists deal with on a regular basis (if ever!), I am expected to teach them what needs to be done and when. This, despite the fact that I have no clue how the system works either, and also have a neurological condition that makes organising even basic parts of my life a frequent struggle.

Throughout my first year on this medication, there was an issue almost every time I asked for a new order. The pharmacy would not order correctly, not alert me when my prescription or authority was due to expire, not inform me when my order came in, or not even know where it had been stored when I came to pick it up.

PTSD when going to the pharmacy

I often went for days, sometimes weeks, without the relief my new medication gave me - despite doing everything on my end to facilitate the process. I began to get PTSD-like symptoms where I would start shaking simply thinking about walking into the pharmacy. Over and over I was being let down, and I couldn't handle having my hopes shattered every time. I’d come home from yet another failed attempt and just cry into my pillow for an hour.

It made me feel completely worthless. How could getting my order correct so that I could live a functional life be so far down the pharmacist's list of priorities, despite it being their literal job?

I couldn’t fathom that they seemed to ignore how important my medication must be, given the enormous price tag associated. People don’t just drop that amount of money for medications that they don’t desperately need.

Grateful for someone's support

At the time, I was living with my dad. He saw first-hand the emotional impact it was having on me, being failed by the pharmacy every time I had contact with them. Eventually, he wanted to help and stepped in to manage the logistics of the ordering process for me.

Am I slightly embarrassed about needing my dad to organise my medication as a woman in her late twenties? Absolutely. But to be honest, the recurring stress I have managed to avoid has vastly outweighed any downsides to this arrangement. I’m incredibly grateful for his support.

Accessing medications was not just my problem

I may have been lucky enough to pass on the majority of my personal medication issues, but in discussing this phenomenon online, I found that I was far from alone. People with narcolepsy across the globe were also contending with constant difficulties with accessing their medications - from doctors, pharmacists, and even delivery services.

Narcolepsy happens to be treated with some of the most highly regulated substances in the world. We are surrounded by so much red tape it can sometimes feel impossible to move. There are so many rules and regulations, most of which aren’t made clear to us in the beginning, that the simple act of picking up a prescription can become a week-long ordeal.

To add insult to injury, we are often judged as being “drug seekers” by misinformed health professionals. They don't understand that narcolepsy is a diagnosis that is almost impossible to fake. Pharmacists can simply decide that we don’t really need the medications that our specialists prescribe, based on their own stigmatised views of our medications.

Not trusting healthcare professionals

Human error is to be expected in life, but this experience feels like a big slap in the face. We jump through many hoops and perform elaborate rituals to get our medications as needed, only to find that someone else’s lack of knowledge or care can suddenly push us back into the abyss of sleepiness.

I mentioned PTSD before, and while I don’t believe this reaches the same level of severity, I do feel that being consistently denied access to the treatments you need to live a healthy and functional life can have a very similar effect of neglect. When you can’t trust someone you are forced to rely on, it can cause lasting damage.

Healthcare professionals are in a position of power where they are meant to be responsible for our care. We are at their mercy, unable to write or dispense our own prescriptions. So when they fail to manage this effectively on a repetitive basis, it can often leave us physically incapacitated in the moment, and emotionally scarred in the long term.

A little bit of care and compassion

Learning to accept a life-long reliance on medication can be a tough thing to get over for anyone. It becomes unbearable when the reliability of your access to that medication is constantly called into question. It feels completely helpless to have no control over your own fate.

I don’t claim to have any miraculous answers for this issue. It is extremely complex and the rules in place change from country to country, from state to state. All I know is that a tiny bit of care and compassion would go a long way. Not stigmatising people based on the conditions they have or the medications they take should be an essential part of being a medical or pharmaceutical professional.

It is okay to feel frustrated

Finally, to any of my fellow people with narcolepsy out there who face similar issues. I want to give you permission to be frustrated, sad, or downright angry. Mark some time to cry in the shower. Vent to an understanding loved one. Write out your feelings then tear up the paper. Whatever it takes to let it out!

It’s healthy to allow yourself time to process your emotions - because while these obstacles can be common, they don't have to become overwhelming.

Have you experienced stigma with accessing your narcolepsy medications? Share your story with others in the narcolepsy community.