Three scenes of a tense patient and doctor encounter, a patient angry on the phone, and patient holding an insurance card

Having Narcolepsy and Dealing With Doctors, Pharmacies, and Insurance Companies

I was diagnosed with narcolepsy in May 2013, and at the time, it was such a relief. I felt as though I could then get my medication, and things could go back to normal.

Within my 8 years of narcolepsy, I have come to find out that the most frustrating thing about narcolepsy isn't just the symptoms; it's dealing with doctors, pharmacies, and insurance companies as well. Here is why.

Doctors' attitudes about narcolepsy

Dealing with doctors when diagnosed, I received medication that was "the newest and best" way to treat narcolepsy. A few days in, I noticed that I stayed awake during the day; however, the medication caused migraines and left me in bed most of the time.

I went back to that doctor to complain about the headaches, and he pretty much told me, "Welcome to narcolepsy. This is just how things are."

I suffered for 6 months until that doctor retired, and then I received a fantastic doctor who took the time to figure out which medication was best for me. It's frustrating to think about the possibility of more doctors like my first experience and not like my second.

Doctors' lack of knowledge about narcolepsy

Another thing that grinds my gears about doctors (specifically primary care doctors) is the lack of knowledge about narcolepsy.

"Xyrem oral solution?" asked my primary care doctor.

"Yes," I replied, "It is for my narcolepsy."

I know that narcolepsy is rare, and it would be crazy for me to think that every doctor should know about all rare disorders. However, I wish more doctors took the time to look over their charts. I feel like that is a simple Google search.

Doctors' limited views of what I can and cannot do

It's essential to know the basic facts about the diagnosis and how the disorder affects the patient. A couple of years back, I needed my primary care doctor to sign off on a document that pretty much said that I did not have any medical issues that could affect my ability to perform my work responsibilities.

She said that because of my narcolepsy that she didn't feel comfortable with signing my paperwork. I respect her decision, but at no point did she ask how severe my symptoms were to make that decision ultimately. I feel as though she just saw narcolepsy and determined I wouldn't be successful. In May 2021, I celebrated 4 years at my job, which I consider very successful.

Insurance companies and pharmacies: lost in translation

Every month, I worry that I will have to go a few days without my medication because of insurance companies and pharmacies' issues. The process of authorization between doctors' offices and insurance companies is very trying.

I called my pharmacy to get a refill of my medication, and they contacted my doctor's office, who then contacted the insurance company to be approved. Usually, things go smoothly; however, at times, things get lost in translation. I then have to go out of my way to call my doctor's office to verify they received and sent the information to the insurance company. All of this back and forth causes a delay in my retrieval of medication.

Sometimes insurance companies cause delays

Just recently, a better version of one of my medications came out. Not only was this better for my narcolepsy but my high blood pressure as well. My doctor sent the pre-authorization script to the insurance company, and it was denied. Meaning they weren't going to pay for it, and this was a costly drug.

It's appalling that an insurance company can dictate whether or not you receive medication versus the educated decision of a medical doctor.

Sometimes pharmacies cause delays

I experience a delay in receiving my medication when dealing solely with my pharmacy. My prescription is uncommon, so most drug stores don't keep it in stock. I have to request a refill and hope that it is delivered to the pharmacy on time. Since I am a flight attendant and have not been home for more than 3 days, this process is daunting and stressful.

What are ways that you handle doctors, pharmacies, and insurance companies? Do you find yourself having the same issues that I have? Give advice below in the comment section.

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