My reflections so far

For the last five years I have been connecting with new people. In 2010 when I was in NYC I met a group of people with Familial Dysautonomia (FD), I then connected with them on social media.

While I didn’t chat with them on a regular basis I was able to see what everyone was up to. I became a part of the FD community.

Once I started connecting with people I knew, other people started adding me to their friends list. Not just people with FD, but parents as well.

I am very active on Facebook. I share photos, links I like and thoughts I may be having. I also share my blog where I write about the obstacles I face having a chronic illness and disability

These families have learnt that I am a young woman who lives independently, drives, works, dates and has a social life.

These are things that most people want to achieve. However for some people it’s not that easy. Having an unpredictable chronic illness can mean anything can happen at any given moment. Life has to stop for unknown periods of time and so achieving the above milestones could take double the time a healthy person could achieve them.
It took me a long time to achieve them. Sometimes I feel like I am ten years behind my peers and at other times I’m just right up with them.

Anyway, being in NYC this time I have met a few people with FD and their parents. The age range is 18 to early thirties and each person has achieved different milestones.

But I think some worry about the future. They worry that they may get worse and may never be able to achieve all the usual milestones that others achieve.

People with FD and their parents see others deteriorate and it scares them. I guess by seeing me it gives them hope and reassures them that it is ok to take risks.

It’s ok to let go and live the life you want to live.


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