At the age of 44, two years ago, I was diagnosed with Friedreich’s Ataxia after experiencing symptoms for a couple of years.
Until then, my life was very full. I had a wonderful social life; I loved going out for dinner or to music gigs. I was even on dating sites and enjoyed meeting new people for coffee!
Since symptoms have got worse as FA progresses, my social life has got smaller. I haven’t been on the dating sites for a few years, as I would be terrified of trying to walk in front of a potential date that I was meeting!
Every social event now is a bit of an ordeal. I would be anxious about it, rather than look forward to it. I am conscious of trying not to withdraw too much, but I am much more comfortable in the bubble of work and home life!
I love music and still try and attend gigs that are important to me, but it can depend on the venue. I would’ve gone to every gig going in the past! But now I have to be much more selective.
For example, I cannot go up or down stairs without a bannister, so there are some arena concerts that are ruled out. If it is a venue that is new to me, I have to Google and research images to make sure it is accessible for me.
Even going out for dinner, which I love, is a bit of a task. But I have learnt wee tricks, or adjustments! If I am meeting a group of friends, I will say to them that I will be there a bit early (so I don’t have to walk in when they are already there). Friends understand this, and they are happy to work around these changes!
A life-changing diagnosis definitely affects your social life. I am determined to keep connections, and I have been inviting friends to my house quite often, as that is where I am most comfortable.
It is necessary to adapt to keep the social connections!
