I'm a teen with a rare genetic condition. Tomorrow I have to make the 5 hour drive (10 hour round trip) to the one good specialist in the country for my disease, and there is NO help for this aspect of my care from my government or insurance.

I'm a teen with a rare genetic condition. I'm getting ready for a trip that happens every time I have neuro problems. I have to drive to a specialist that is about 5 hours away from my house. It takes up an entire day of my life when I have to go to see him. We live in a country that's supposed to have good healthcare, but in reality, getting help for my disease is terrible. For this aspect of my care, no one helps me. I have to drive there for both appointments and surgeries, and I have to miss school and work for these days. My specialist is the only one in the country who is good at treating my condition. It causes problems with my autonomic nervous system, and there is no one in my city who has any idea how to treat it. I'm getting ready to see him tomorrow for a new neuro problem I've been having, and I'm wondering... Does anyone else have this problem? I feel like I'm maybe overreacting, and it's hard to explain to people without over sensationalizing it because it IS a big deal to be having to make this trip, but it's a normal part of my life and I don't want to make it seem like it's a huge hardship when it's not. Also, I know that there are way worse circumstances than this for medical conditions, so I feel bad talking about it because it's not that bad and other people have it way worse.<br><br>Edit: I don't know anyone with this disease, so I don't know how people that live in America are treated. It seems like a lot of you have to travel for specialists as well, but from what I've gathered, half the time insurance companies in the US will cover travel expenses for this kind of thing. There are also often programs to help cover the costs for lower income households. In my experience, there is no help for the travel expenses, so you have to pay out of pocket.