Overcoming the Isolation of Living in a Rural Area

We live in a small town in northern New York state. Although we are only an hour away from the treatment center, there is no local Chapter, and only a few families in the area are affected by hemophilia. After having lived in Boston, where the bleeding disorder community is very large and Adam grew up with many friends who were affected by hemophilia, it seems quite “empty” here. Adam and Zach don’t have any friends with a bleeding disorder here. And, because we don’t have a Chapter to organize events or get-togethers, the only chance for the boys to be with other children/adolescents like them is when they go to camp. To attend the nearest function, we usually have to drive a minimum of two hours and often up to five hours. Depending on time constraints, we may have to stay overnight, which can be hard on the budget. Then there is the issue of snow. Of course, whenever you have to make that emergency run to the hospital, it always seems to be in the middle of a blizzard!

The isolation is hard on both children and parents. I know how difficult it is for Adam and Zach not to have anyone to talk with about their issues. Many of their friends know they have a bleeding disorder, but they don’t understand what it’s like to live it. And other parents don’t always understand what it’s really like to live this life unless they too live with a serious, rare, chronic disorder.

We make a great effort to let the boys be as “typical” as possible. So when they have to deal with a bleeding episode, especially the more difficult ones, it can be very lonely. Of course, friends and family care and are concerned, but it is difficult to explain to them what it is really like having to drop everything at a moment’s notice to infuse or run to the hospital. Families who live with bleeding disorders just “know.”

I’m sure that like me, most mothers of children with bleeding disorders generally put up a great front if for no one else but the kids. We say, “It’s not a big deal,” “We do this all the time,” “You get used to it.” But that doesn’t alleviate the constant worry, the exhausting habit of making sure everything is in place for anything you do, planning ahead “just in case,” the nauseous feeling that hits every time you open an insurance claim. It just wears you out at times. But you try not to worry and wait for the time you can spend with another mother who really understands.

So how do you deal with this isolation? Over time, you develop telephone contacts. You make the time to travel those distances that bring you closer to others in similar situations and add to your list of contact people. The most difficult thing about calling another mom is that life keeps people so busy. You may not have been very good about keeping in touch between those special events; you hate to call out of the blue to gripe; you don’t want to burden them with your dilemmas and stressors. But it’s important to keep in mind that most people are happy to talk and share regardless of how busy their lives are. I have a great relationship with a mother who lives about an hour away. There are times when we talk every day! We also make a point of getting together at least once a month. It’s not easy to do, but we are always glad that we made the effort and our hearts always seem to be lighter afterwards.

For those moms out there who have never had the opportunity to meet others, take the plunge! Sign up for an upcoming event, take time out of your already full schedule and find someone to connect with. Where might you look for events? Call the nearest Chapter in your area (even if it’s a few hours away). Call your treatment center; they often have get-togethers at a zoo or ball game. If you have a homecare company, see if they have picnics or ball game outings to attend. Make it a family event if you don’t feel comfortable leaving the family behind. Even if you need to travel a distance, this type of interaction should be on your list of priorities. Isolation can make us stressed and weary, impairing our ability to be effective advocates for our families. Contact with others can be just the thing to get you over “the hump” or give some “light at the end of the tunnel.”