A diagnosis of ataxia can feel overwhelming to anyone, but a diagnosis of a rare neurological condition for a young person, who may be just starting to make plans for the future, can be even tougher to deal with.  You, your family, and loved ones, may all need time to adjust to the news, and you may find it difficult to open up about how you feel and what you think – but open and honest conversations about your thoughts and concerns can help make it easier to deal with how you're feeling now, and how you might feel in the future. If you’re struggling to come to terms with your diagnosis, the good news is that you don’t have to face it on your own. Ataxia UK can help you access the sort of support you need.

It’s also important to remember that there isn’t a right way to respond to a diagnosis. Being diagnosed with ataxia can be confusing and bring with it a lot of questions, especially as you may not have even heard of ataxia before, but you might also feel relieved to have a name and diagnosis for symptoms that previously couldn’t be explained. You may feel distressed, or experience a sense of loss and grief– it’s likely you’ll feel a combination of all these things at one time or another, and however you react is part of the normal process of dealing with what’s happened. You might also find that you have to start making some changes in your life as a result of living with ataxia, but it’s important to keep in mind that you are the same person you’ve always been, and you don’t have to throw away all your hopes and dreams for the future.

Accepting your own diagnosis can be a very difficult thing to do, so many find it hard to tell their friends, family or loved ones that they have ataxia. Here is when having an open and honest dialogue is important, but being able to open up about something so sensitive can be daunting and takes courage and time, and sometimes people won’t react in the way you expect or want them to.

Most importantly, you should remember that living with a long-term condition isn’t easy but you are not alone. Ataxia UK can help you speak to people who can help, and understand what you’re going through. We can also put you in touch with local branches and support groups where you can speak to people who will offer you help and guidance.



Gemma Fish shares her thoughts...



Growing up with ataxia was hard, it was very hard actually. I often had the feeling that something was missing, something that should be there wasn't and something was there that shouldn't be. I've had ataxia since I was 13 months old, so before I could even form a full sentence I already had a condition that could and would affect my entire future. I always wanted and tried to be just like my school friends and tried to deny the part of me that I felt didn’t work right. I went to Ballet classes, Karate lessons, Brownies and even swimming lessons, but I had to stop all of them because either they were making me more ill or my neurologist and doctors thought that they would affect me in a negative way, so again I couldn't be like other children. The bullying was one of the hardest side effects of not being like other kids though, but the parents were worse than the children, often disinviting me to parties or telling people I belong in a straitjacket because they just didn't understand and didn't want to. People sometimes forget about the psychological effects of living with a long-term condition but those affects can be devastating to the individual and to their families who have to live with it too.

I somehow made it through, so it is possible, I promise you, and along the way I realised that there are upsides to having ataxia. Living with ataxia means that I have more tolerance for other people and if I see someone stumbling I don't assume they've had too much to drink, I think to myself "maybe they've got something wrong with them too". Plus I never would have met half the people I have done if I hadn't taken a different path due to my genetic make-up. Somehow making sure that I have good, understanding people around me has helped keep me from going under, I find that in those crazy, anxiety filled days of having no clue where you're going, some mindfulness meditation can help clear the cobwebs and remind you that you're alive and that you do have a very valid place in this world. There's nothing like feeling connected when you feel disconnected to get you through the dark times.