Starting a Support Group. Who, Me?

Today I explain why I'm starting a support group, something I've never considered before.

Dealing with Syringomyelia over the last couple of years has had its difficult moments. I've gone from being an accomplished hiker and mountain biker to struggling to walk at times. I used to take my health and ability to concentrate for granted. Now I'm thankful whenever I can move or concentrate on something without the distraction of pain.

I do not suffer without support. I am so fortunate to have married the girl of my dreams last year, expanding my family with more people who care about me. I am so thankful for all my friends and family; they are a wonderful support system for me.

Why, then, is it difficult to talk to them about my condition? Why would I ever need more support than what I have now?

For one thing, it is hard to explain the cereberal spinal fluid dynamics of hydromyelia to someone when they just want to know why you're not going hiking like you usually would. A simplified explanation often falls short. "Just take some ibuprofen if your neck hurts," or "come on, tough it out," are likely to be responses. My friends and family care about me, but I need to explain the predicament I'm in so they can understand. If I say "I have a disease and it's bad so I can't do stuff," that only piques curiosity.

To be honest, I do not mind explaining my condition to people. In fact, I need to vent about it on a regular basis. I start to feel a little alienated, however, when I explain what is wrong with me. Suddenly they understand, and that makes me different. It is hard to explain what I mean.

I also think about the people I talk to about this. My wonderful wife takes the brunt of my complaints and worries with stride, but it is hard on her. She feels bad because she cannot solve my problems. She cares about me deeply and when I talk of pain, she feels it too. When she is sad, it makes me sad. You can see how this could become a cycle of negative moods.

To break this cycle, to help those I love, and to help myself, I've decided to start a support group. I will volunteer my time to help people in my area with syringomyelia and chiari malformation meet and talk. Those who suffer need extraordinary support, and I believe they can help keep balance in their own social lives by getting together.

I threw up a web site for the new Syringomyelia and Chiari Northwest Support Group today, let me know what you think.