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Alison’s Story

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How has your life been impacted by narcolepsy and idiopathic hypersomnia?

Narcolepsy has affected my ability to maintain relationships. It’s also put a damper on my mental health, which at one point led to me developing a binge eating disorder. Before being diagnosed, I could never get out of bed; I felt so tired, despite having already slept for an excessive amount of time. When I tried to get up, my entire body would hurt and feel heavy – at times, I even fell to the floor. When that happened, I could hear people but couldn’t get myself to move. At other times, I couldn’t sleep at all. Naturally, my problems soon started to concern my family and friends. After a series of tests, I found out I had narcolepsy with cataplexy and idiopathic hypersomnia. At first, it was a struggle to comprehend my diagnosis. But now, almost 10 years later, I’m doing better, and for the most part my condition is manageable. I adore being an advocate for myself and fellow narcoleptics through the Narcolepsy Network.

What is one thing you’d like people to know about narcolepsy and idiopathic hypersomnia, and the challenges that you’ve faced?

It can take years for narcolepsy to be diagnosed properly. In my case, I can’t even estimate how many doctors and loved ones said I was faking my symptoms, or how many times I was called lazy. I feel like too few people sufficiently understand the ins and outs of this disorder.

Have you faced barriers to care?

Getting support from family and friends was difficult at first. I didn’t have much of it. I was treated like an  outcast because I always wanted to sleep. Financially, the condition has definitely set me back. I really didn’t get a good start in life. There was a long delay in getting a diagnosis, and I lacked the proper resources to help me address my narcolepsy. Things only began to change when I was about 19. I’m now a few months shy of being 30.

What lessons have you learned that could potentially help others with narcolepsy and idiopathic hypersomnia?

Don’t give up. Listen to your body. Pursue getting all the resources you can. Keep fighting. Make yourself a warrior against narcolepsy or idiopathic hypersomnia.  Living with these disorders is terrible, but try to be optimistic – it could always be worse!

What is one thing you’re proud of as someone who is affected by narcolepsy and idiopathic hypersomnia?

I’m proud to be part of a beautiful network of people like me who are fighting through every day, determined not to let our illnesses define us. I’m proud, too, for not giving up on my fight, despite the shame I’ve received for my symptoms over the years.