Emotional & Psychological Support

Over time, you may have experienced a range of emotional ups-and-downs, just as your friends may have, but your SMA and the impact it has on you means you have extra stresses and challenges to manage. Having a disability can make it harder to form friendships, what with all the hospital appointments and stays you have and the barriers there are when it comes to getting to the places your friends like to go. For example, even getting into friend’s houses can be a problem if you use a wheelchair and sleepovers might present all sorts of challenges. This, or other issues, may make you feel anxious, frustrated or angry that it feels as if you can’t have an ordinary life and do the things you want to. You may also be dealing with pain, swallowing and breathing difficulties and get fed up that everything is so much harder to get done and takes so much more time than if you didn’t have SMA. You may wonder ‘why me?’. At times it can be really hard to feel good about life. At other times you might realise that actually you’re great, you’re fun, people like you, you’re pretty good at school work and that brain of yours is ticking away big time and you’re going to really get on and live a good life. 

Wherever things are at for you, it’s good to talk and not bottle-up bad - or for that matter, good - feelings. Do talk to your parents and teachers. There might be someone else in your family who you feel would understand; maybe an aunt or uncle or grandparent. Your medical team are there too - again there may be one of them you particularly get on with who you know understands what it’s like having SMA. There are lots of other ways you can get emotional and psychological support as well. There are some ideas below:

Please note: a lot of the information / resources on this page are aimed at those aged 18+ so we recommend that you talk through any of the following with your parents.

Page last updated: July 2019