Keep People With Narcolepsy Alive, Not Just Awake

Trigger Warning: This article discusses depression and suicidal thoughts. If you or a loved one are experiencing suicidal thoughts, there are resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.

In another article, I discussed my personal journey with suicidal thinking over the course of my teens and early twenties. This was intricately tied in with my narcolepsy symptoms, to the point where I could barely tell where one issue ended and the other began. And yet I was far from alone in this experience, with rates of mental illness significantly increased among people with narcolepsy (compared to the average person).1

Narcolepsy and mental health

Despite managing to pull myself out and access the help I needed, to the point where I am fully recovered now years later, I can’t help but wonder what a difference it would make if health professionals were much more proactive in taking care of our mental health.

A recent study showed that people with narcolepsy type 1 have a higher risk of both depressive thinking and suicidal ideation.2 To me this is a massive blinking sign, suggesting that this is an issue that needs to be taken very seriously.

Changing how doctors ask about mental health

We need sleep specialists who are trained in asking the right questions around mental health, and how to ask them.

Don’t ask a teenager if they’re depressed right in front of their parent - you’re much less likely to get a truthful answer. Ask difficult questions more than once, so that the patient has more than one chance to open up. Ask questions that give background information about their mood without using the word “depression”, as many people can feel completely awful and still not identify themselves as “depressed”.

Never make assumptions about how a person might feel deep down based on the way they present to you, we’re used to faking both energy and enthusiasm.

More discussions with psychologists

I strongly believe that absolutely all people who get a diagnosis of narcolepsy should be referred to a psychologist, whether or not we flag as being depressed at the time. This should be heavily encouraged by the sleep specialist, so that it becomes simply a part of the routine of being diagnosed with narcolepsy.

This would give people the opportunity to not only work on any mental health issues they are experiencing, but also the chance to talk through the grief we all experience when receiving a life-long chronic diagnosis.

We need access to professional mental health support

Our friends and families can be amazing sources of assistance and compassion, and I am lucky that this was the case in my life (once I learned to lean on them). However, this is no substitute for professional mental health support.

We need to have access to doctors who have the knowledge of how to support those who are severely depressed, anxious, or even suicidal. We need the chance to access the right forms of therapy, and perhaps even medications, to help us manage our moods as well as our sleep.

Reducing stigma and normalizing mental health support

This type of preventative approach would help to reduce the stigma of seeking mental health help, and catch those who might not yet recognise their own depression symptoms as separate from their sleep issues. It would also allow people to develop a relationship with a psychologist early on, so that if they were to start struggling again (which is fairly likely given the chronic nature of our condition), there would be less of a barrier to reach out for help in the future.

Non-clinical support

In addition to clinical supports such as psychologists, psychiatrists, counsellors and therapists, non-clinical supports would also be a great avenue for sleep health professionals to promote.

Most of the work I have done in the narcolepsy community has grown out of my involvement in support groups, and I have heard countless first-hand stories from people who have changed their perspective on their condition thanks to being in touch with others who truly understand their experiences.

Opportunity for peer work

Similarly, I think there is a lot of potential for peer work to become an effective modality for supporting people with narcolepsy. In this model, people who have years of lived experience could offer understanding, validation and hope to those currently struggling - on a professional basis.

This format is much like speaking to a counselor who is able to share their personal experience while being mindful of appropriate boundaries and is especially helpful for people who have been harmed by mental health practitioners in the past (common for those with narcolepsy who have experienced multiple misdiagnoses of mental health disorders).

Prescribing more than a pill

When speaking with another person with narcolepsy recently, they mentioned that for doctors “managing our mental health is just as important as managing our sleep.” As such, when specialists are busily prescribing us medications to keep us awake and put us to sleep, they also need to be prescribing us therapy and community support to keep us happy and well.

We all know the toll that mental health issues can take on our sleep, and vice versa, so focusing on one without the other is unlikely to lead to the most beneficial result.

Looking beyond diagnosis and treatment

To end on a slightly lighter note, one of the positive things to mention is that once people are diagnosed and treated, research shows that mental health outcomes appear to improve. So we know that having a name for our issues and having medications to help do assist in managing the risk of suicide.

However, I don’t think that relying on this alone is good enough when we are talking about the risk of people ending their own lives, and I would really urge sleep health professionals to change their processes to take this into account.

After all, what’s the point of keeping us awake if we still don’t find life worth living?

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