You feel really alone because of having a rare disease.Having a rare disease can make you, your child, or your loved one feel isolated. You may feel as if you’re the only one dealing with this illness because you don’t know anyone else who is. Your primary care doctor might never have seen a case of what you have before. The specialists you go to may have only seen a few people with it. And trying to explain it to someone else can be difficult. Friends and relatives often feel awkward talking about illness, let alone something they’ve never heard of. Finding someone else who has the same disease helps you feel less alone.
People don’t understand your disease.
There may be aspects of the disease you have that make you feel different from other people, such as very noticeable skin problems, or an unusual appearance of your face, or difficulty walking or caring for yourself or your loved ones. People might have difficulty looking at you or talk down to you, as they often do with people with disabilities. For example, I was with my friend, who uses a wheelchair, at a restaurant. The waitress looked at me and asked me what my friend wanted to eat. I said, “I don’t know. Why don’t you ask her?” If you look different than most people, some people may treat you in insensitive ways.
Or maybe you have the opposite problem -- your disease is all inside and isn’t obvious, or you are tired or weak all the time, and people have difficulty understanding that you have a rare disease. They may wonder why you have a handicapped parking permit or go to the doctor so often because you don’t “look sick.” People may offer you advice about how to relieve your symptoms that they know nothing about.
You’ve had trouble getting a diagnosis.
You may have spent a long time getting a diagnosis, gone through a lot of medical tests and examinations, and talked to a lot of doctors. You’ve been poked and prodded and given enough blood to float a boat. Then you learned you are dealing with something that is difficult to understand, and that few other people have it. Or maybe you were misdiagnosed for a while, or the diagnosis keeps changing.
- Why Is Getting A Rare Disease Diagnosis So Difficult?
- Waiting For A Diagnosis
- Feelings When Finding Out Your Diagnosis
You would like help adjusting to living with the disease.Sometimes people who want to offer sympathy may say, “I know what you’re going through.” The only people, though, who really know what it’s like are people who are dealing with the same disease, or one like it. They can offer you tips for dealing with symptoms, getting the right specialist, advice for preventing complications, and most of all, a listening ear from someone who really understands. You may just need to vent, or you may need more in the way of communication with others and access to resources.
If you're short on time, money, or have trouble traveling, you can still get the support you need. Most national support groups have chapters that meet locally, and almost all have online forums or email lists for members to be in touch with each other, and many have print newsletters that are mailed to members.
To find support groups in the U.S., contact the National Organization for Rare Disorders. In the UK, use the resources at Contact A Family. In Europe and surrounding countries, see the Patient Organizations list at OrphaNet.
The Internet has brought together people with rare diseases from around the world in a way that wasn't possible before. I've heard from people who were excited to finally meet someone else with the same disease. A support group may be just what you need to help you connect with other people and find a listening ear.