The Challenges of Rural Life and HS

I have moved 25 times in the last 30 years. I’ve lived on an island where the year-round residency was 300. I’ve moved across the country 5 times. I’ve moved to cities and towns where I haven’t known even one single person. I’ve lived in cities with decent public transit, and I’ve lived in places with absolutely no public transit. I think I can say with some authority that it’s less difficult to deal with all of the issues surrounding hidradenitis suppurativa when I am in a large city than when I reside in a low population area. I absolutely know I’m not alone because of what I’ve heard from fellow HS warriors.

Location barriers to receiving proper HS care

For example, one of our biggest obstacles is getting diagnosed. If we live in a low-population area, statistically a primary care doctor or even a specialist has a lower chance of seeing patients like us just in volume. Less sightings equal less correct diagnoses. And stomp your feet and do a little dance if you agree with me, but doctors in more rural areas are getting overwhelmed.

There just aren’t enough doctors out there, even with incentives to try to get them to move to rural areas. Unless they grew up in rural areas themselves, not all of them see the appeal. It takes time to drive to amenities like gas stations and grocery stores. Schools are a long distance away (trust me, I did that bus ride for an hour every morning and evening). Entertainment such as restaurants and movies are limited. Shopping is one or two big box stores unless one wants to hop in the car for a more extended drive.

Limits with insurance

Another issue specific to a patient that lives in a rural setting is that sometimes insurance limits choices for specialists to the point where it’s nearly impossible to receive care. For instance, my parents currently live in a tiny town of 300. Having lived there myself for about 6 years total, I happen to know there are very few dermatologists to choose from in the nearest larger city of 76,000 people approximately 30 minutes away. This has happened to fellow patients before, but what if insurance insists that I have access to only one doctor, or not even that doctor, but another doctor 2 or more hours away? I can’t even begin to tell you how often this happens. Insurance (in the U.S.) determines so much about the hows and whys of medical care, that we experience more harm than good at times. We are at their mercy.

If a patient does opt to go to the next doctor on the list because the first one doesn’t work out, sometimes the next one is a substantial distance away. People who live in rural areas get used to driving long distances, and doing things like buying vehicles with lots of cargo space so they can buy in bulk, but it’s still a big deal when they have to travel for doctor appointments. If you have done your research for hidradenitis suppurativa and your doctor is supposed to be knowledgeable, he or she had better be worth it, because you put some miles on. What do you do if the appointment is a disappointment?

Some of us do not drive

Last but certainly not least, some of us who suffer with HS don’t drive. Maybe we have to rely on someone else, like a friend, spouse, or family member to get us to appointments. This is a big deal in rural areas because again, it could mean long traveling time to get to who you really need to see for your HS. That means that the person behind the wheel also needs time off from their normal activities, which may include work.

Do they have time to take off? Who has half a day or a whole day of hours banked to drive another person to an appointment? Are they going to want to keep sacrificing that time if these visits aren’t productive?

Living in a rural area with HS is difficult

I really feel for the HS patients and their caregivers who have decided to stick it out in rural areas, for all of the various reasons that they like those wide open spaces and privacy. Family and friends are nearby. The community is established and welcoming. For the most part, everyone agrees with the collective values.

But needing healthcare, and specifically needing healthcare for hidradenitis suppurativa, is especially difficult when living in a rural area. It’s an uncommon (but not rare) disease and it requires knowledge, patience and perseverance, and a willingness and ability to keep up with the latest treatments. And HS patients need constant monitoring and care, and there just aren’t enough resources in rural areas. I personally have to stick to my big city to make sure all of the resources are in place for me to receive proper care.

Read more about the rural physician shortage in this article published by the Association of American Medical Colleges and what is being done to address this problem.