How I Lead a Balanced Life With Narcolepsy

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How I Lead a Balanced Life With Narcolepsy

By Caroline Arnette, as told to Evan Starkman

I was 14 when a sleep specialist diagnosed me with narcolepsy. For 3 solid years, I'd been feeling exhausted all the time, and it greatly impacted every aspect of my life. Before I started having symptoms, I was super active, had a lot of friends, did sports and plays, and loved school. I was getting really good grades.

But by the start of middle school, especially eighth grade, everything had kind of fallen apart. I had never had mental health issues before, but I was having really terrible anxiety and depression. I started pushing away all of my friends, and my grades started to slip. What used to be an effortless "A" was now a struggling "B." My family all knew that I had terrible sleeping problems. We just didn't know if it was teenage angst or something else -- we had no idea. Aside from sleeping a lot, I kind of lost a desire to do anything, including exist.

I attempted suicide. That's when my family and I reached a point where we were like: "OK. These health problems are not going to go away without help." So, I was referred to a sleep specialist, my neurologist, and he diagnosed me with narcolepsy. I can say with certainty that if I hadn't gotten diagnosed, I would be dead right now.

Extremely High Stakes

It took time, but treatment gradually helped me feel like myself again. Medications eased my daytime exhaustion, helped me sleep better at night, and led to fewer bouts of muscle weakness or paralysis called cataplexy, a condition that affects some people with narcolepsy. My mental health improved, too, once I got my sleep disorder treated.

When I was stable enough -- and sleeping well enough to be able to take a breath and reflect -- I was like, "This is a life-and-death situation." Now that I knew I had a long-term health condition, it gave me a direction, a course of action. I thought, maybe I could help someone with narcolepsy get diagnosed faster, or even help save lives.

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Lots of people don't know what narcolepsy is. Or when they think of it, they think of someone falling asleep in a bowl of soup and everyone laughing. And while that has happened to me and I did laugh at it, it is a lot more serious than some people think. To raise awareness, I've spoken with everyone from kids and young adults to nurses in my school district to elected officials on Capitol Hill.

For me, the stakes are extremely high. One time, I was talking with a bunch of other young adults who have narcolepsy. At least half of us said we had tried to kill ourselves. And at least two-thirds of those people said they'd never told anyone else about it. So, I feel like I should be extra loud about it. If it makes someone feel less alone, it's worth it.

Narcolepsy With Other Health Conditions

Some people with narcolepsy also have other conditions. For example, I had crippling anxiety and depression. And I have peers in the narcolepsy community who are struggling with weight and high blood pressure.

Personalized medical care is super important, especially for chronic health issues. Hypertension and obesity don't particularly run in my family, but mental health problems do. So, my doctor focused much more on my mental health. Whenever I have checkups with him, we talk about how I'm doing, how I'm feeling.

I feel great. I'm very happy, and I'm very lucky. It's just something to keep an eye on in case something gradually changes.

A Balancing Act

Along with treatment, lifestyle changes help me keep my health risks as low as possible. People with a long-term condition have to be twice as vigilant and work twice as hard as people who don't have one.

I very much need a schedule to feel healthy. So, I eat meals at around the same time. I go to bed and wake up around the same time. And because I have chronic exhaustion as a part of my narcolepsy, I go to bed early.

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If I'm going to get together with my friends in the evening, we hang out at a place close to my house or at my house so I don't have to drive at night, when I'm more tired. So, I just have to make plans according to my body and my sleep schedule.

I also eat healthy. I went through a period where I didn't eat well, both in quantity and quality, and I just felt terrible all the time.

Treatment and lifestyle changes help me feel my best. These days, I'm a year-round athlete -- a rower. Socially, I have a lot of friends both at home and at school. My motivation and passion are back, and I'm achieving academically. So I'm really lucky. The unfortunate part is that my story is an outlier. My success is unusual.

Where to Find Help

The National Institutes of Health website has good resources on narcolepsy. You can also learn more through Narcolepsy Network, the national nonprofit organization that I volunteer for.

Narcolepsy Network also has many different support groups, including ones for people of different ages. We also have young adult social hours for people 14 to 22 years old. So if you're a young adult with narcolepsy and you want to find a community of peers, that's a great place to start. Narcolepsy Network has other community-based programs if you're outside that age range.

If you're having suicidal thoughts, it's incredibly important to reach out to absolutely anyone right away. You could call a hotline for suicide prevention or mental health. And even though it may be uncomfortable, you could talk to your family or close friends. The key is to find a support system and get help.

WebMD Feature Reviewed by Neha Pathak, MD on August 16, 2021

Sources

Photo Credit: Joel W. Rogers / Getty Images

SOURCE:

Caroline Arnette, youth ambassador, Narcolepsy Network.

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