Hi I’m Jamie-lee, I’m a 25 year old lady and this is my first post on FAN. I’ve been meaning to post for a long time but never found myself doing it. Anyway recently I had an idea about what I wanted to write about, I was inspired by the simplicity of other blog posts on FAN. I realised I hadn’t been posting because I wanted my first post to be a lengthy in-depth piece about some important issue in the disabled world, you know something really fascinating, and I was struggling to come up with a topic. I know now that it doesn’t have to be well-researched or lengthy. I have decided to write about how I was diagnosed, and the effect FA has had on my life.
I was eight years old when my symptoms first became noticeable. My wonky gait was the most telling, but it wasn’t until I was eleven, when my dodgy hand-eye co-ordination began playing up, that I was tested for Friedreich Ataxia.
When I was diagnosed I had no idea what FA was, like most people. I wasn’t overly concerned with my diagnoses at that age, I didn’t even understand it yet, but my parents obviously were and over the next few years they educated themselves about it. My dad became heavily involved in co-founding and managing the research association for FA in Australia, so much so that my mum began working full-time so he could concentrate solely on the not-for-profit.
The support I received from family and friends while growing up helped me through the bad times. It definitely made me the woman I am today.
I think if I were to tell any newly diagnosed FAers about the way FA has impacted my life I would tell them that my life has been different as a result. It hasn’t been easy to live with sometimes, but FA didn’t dictate the way I lived my life or its worth.
It took me a long time to realise FA won’t ever define who I am. It took me even longer to stop comparing myself to every other able-bodied person my age. Eventually I became comfortable in the skin I’m in, and accept my numerous flaws.
I know this loss of identity is a struggle all FAers go through, and it breaks my heart to think that others out there are going through what I’ve been through. Take comfort in the knowledge that it does get better. Learn to love yourself and the rest will just fall into place.