This article first appeared in Narcolepsy Network’s First Quarter 2020 Newsletter.

Living in a small town or rural area can conjure feelings of charm – that coziness of living in a tight-knit community. It’s a chance to escape the hustle of urban life with wide-open spaces. However, there are drawbacks: no Ubers, access to public transportation, or other services that may be readily available in a nearby city, just to name a few. According to the Centers for Disease Control and Prevention (CDC), more than 46 million Americans (about 15 percent of the entire US population) “live in sparsely populated areas with low housing density, often hours from urban centers.”

Over the last decade, there has been a trend of physicians leaving rural areas. The National Rural Health Association estimates that the patient-to-primary care physician ratio in rural areas is just under 40% physicians per 100,000 people, compared to about 53% in urban areas. While these numbers reflect the general practice of medicine and not a specialty such as sleep medicine or neurology, it is still important to note since many people will go to their primary care doctor when they start feeling like their symptoms are becoming problematic. Data collected by the Association of American Medical Colleges’ Consumer Survey of Health Care Access in 2015 reported that Americans living in rural areas are seven times more likely versus those living in urban areas to not be able to receive the healthcare they need. Of those surveyed who could not find access to care, those in rural America were twice as likely to report that they could not afford the care and up to five times as likely to say that transportation was a reason that they could not access care.

Now add narcolepsy to the mix. How do people with narcolepsy compare to the general rural population? We asked a few members of the narcolepsy community about their experiences living with narcolepsy in rural America.

Here are some stories from around the country.

Tracy from West Virginia
I am from a very small town in the mountains of West Virginia. After graduating high school, I moved to Virginia where I began working at a hospital and attending community college. I was then finally diagnosed, after having trouble waking up for work repeatedly. My primary care physician caught me sleeping, sitting in a chair, while I waited to see him about my difficulty waking up for work. The hospital where I work has a sleep center and my initial narcolepsy treatment was provided by a well-educated pulmonologist. At the time, there was no neurologist providing sleep disorder care at this facility. I was diagnosed at the age of 23. I have been blessed with a patient, caring, and loving wife and a 2-year-old daughter. They are my support group. The closest support group for narcolepsy is over an hour away. The closest site for clinical trial inclusion is three hours away. Being employed in the medical field, I would love to be able to help advance the treatment options for narcolepsy.

Norm from Canandaigua, NY
I believe my narcolepsy started showing itself around 1960 in high school when I was often chastised by my teachers for falling asleep in class – it made learning very difficult. In college, I had to drive two hours to school and noticed a difficult time staying alert while driving. I made it through 42 years of employment, even as a traveling consultant. However, it was never easy and I have struggled all my life with narcolepsy. My wife and family have all been very supportive, but I know it has never been easy for them either. My friends always drive when I travel with them. My doctor is roughly a half-hour away. There are no local support groups within 50 miles of my home.

Kristi from South Carolina
My dad had narcolepsy his entire life. Everybody in the family, especially my dad, always said that I had it too. When I was in my 20s, I went for a sleep study and it was confirmed that I had narcolepsy. There is a huge lack of awareness in my town. I don’t even tell anyone I have it. The old attitudes and jokes are still around. People either think it’s funny or you’re not up to par at your job. I think it would jeopardize my job if my boss knew about my narcolepsy. I try to stay very busy at work to avoid sleepiness. Sometimes though, I have to take a nap in my car on my lunch break.

Tracie from North Carolina
I am the parent of a child who was diagnosed with type 1 narcolepsy in the summer of 2015, right before her senior year in high school. We started seeing symptoms in 2012, right after she hit her head and had a slight concussion. For over a year, everything was blamed on the concussion – changes in sleep, confusion, short-term memory loss, depression, and anxiety. Interestingly, living in a small, rural town and community, everyone could see something was wrong. In many cases, it was a blessing. I had a neighbor call me one day to tell me my daughter was sleeping in the car, in her driveway. She promised to keep an eye on her and to let me know when she left for home. We realized this was something we needed to address – safe sleeping spots. Our town is so rural, all of the community children attend high school in a different town. Fortunately, we are on a first-name basis with employees at the library, pharmacy, and fast food locations. We went around asking everyone to let our daughter sleep at these locations and they agreed. We spent three years trying to get answers about our daughter’s health. Our pediatrician did blood work and listened, but he had no idea of what it could be. Our daughter became so desperate she started searching on the Internet. It was there that she found answers – narcolepsy with cataplexy. We took this information to her pediatrician and were referred to a sleep specialist about 35 miles away. While her diagnosis was a relief, it also brought about more questions. We soon realized the medication route was going to be long and complicated and that in addition to this we were going to have to make several lifestyle changes. It was during a conversation about this, with her sleep specialist, when he mentioned that it would be great if there was a support group in the state, but the only one the state had was a Facebook group. I responded by stating that I would start one. With the passion of a mother trying desperately to help her daughter, I started Foothills Narcolepsy Support Group in April 2016. We started with one other individual who lives about three miles from us. Now our group has over 100 members on our Facebook group and usually averages about 12 at our monthly meetings. Our narcolepsy support group is very active and open about narcolepsy. I think all of our members have a true passion for spreading awareness and understanding. Now, my daughter is living over 60 miles away and attending college. In 2015, when she was first diagnosed, we could not imagine she would be able to do this. But, through her perseverance and dedication, she has been able to make this possible.

Out of the people we interviewed, most members had access to adequate care. Lack of awareness is still a big issue. We continue to educate and support all of the narcolepsy community, no matter where you live. For more information about the resources we provide, please visit www.narcolepsynetwork.org/resources.

Do you have narcolepsy living in a rural area? How is your access to care? Let us know by emailing us to [email protected].