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 reviewed / updated: March 2021
Next review due: March 2022
Young Minds – a national charity that has lots of ideas about how to look after yourself and suggestions about where you can get help: www.youngminds.org.uk or phone 0808 802 5544
Childline - a free, confidential place for young people to turn to whatever problems or dangers they’re facing. Trained childline counsellors are there 24 hours a day to help anyone under 19 in the UK with any issue (big or small) that they’re going through. They support by phone, Email or online chat: www.childline.org.uk or phone 0800 1111
Support Line –their website has information on a wide range of problems plus offers confidential emotional support via their helpline: www.supportline.org.uk or phone 01708 765 2000
The Mix – provides free information and emotional for young people under the age of 25. See their website for details of their helpline, Email, online chat and crisis text services: www.themix.org.uk or phone 0808 808 4994
Childnet International work to help make the internet a better and safer place. They have resources for young people and parents: www.childnet.com
Therapy & Counselling
You may find talking confidentially with a psychologist or counsellor helpful. There might be a counsellor at your school or you may be able to contact one via your GP, medical team or local hospice. If you’re aged under 16, you’ll need your parents’ permission.
If you’re not sure what counselling involves, the links below may help. Otherwise you may wish to talk options over with an adult you trust, or in confidence with a worker at one of the organisations listed under the section on ‘Online Support’ - see section above.
NHS website gives an overview of counselling and what you might expect: www.nhs.uk/conditions/counselling
CAMHS (Child and Adolescent Mental Health Services) - your GP may offer to refer you to this service which is your local specialist NHS mental health services for children and young people. It can have long waiting lists. You can also search for services in your local area via: www.nhs.uk/Service-Search/Childrens-Adolescent-Services/LocationSearch/691
British Association for Counselling and Psychotherapy (BACP) - provide useful guidance on counselling and how to find a suitable counsellor: www.bacp.co.uk or phone: 01455 883 300
Counselling Directory - provides online information about different types of counselling and a directory to search for qualified counsellors: www.counselling-directory.org.uk/gettinghelp.html
The British Association for Music Therapy explains more about music therapy and has an online ‘Find a Therapist’ search tool. It may be an option you like the sound of: www.bamt.org/british-association-for-music-therapy-resources/find-a-therapist.html
Joining Groups & Activities
Talking To Others Affected By SMA
Asking other people who have SMA how they’ve managed the things you’re finding worrying or difficult can be really helpful.
SMA UK has a network of young adults willing to be in touch with other young people. There are also some online communities for young people with SMA. Have a look here: www.smauk.org.uk/young-adults-network
If You're Being Bullied
If you’re being bullied at school, either face-to-face or through your mobile or online (cyber bullying), talk to your parents and teachers straight away. Schools have the responsibility to have a whole-school approach to dealing with bullying.
The following organisations can also help:
Looking After Your Mental Health & Well-Being
Looking after your health and wellbeing is just as important for your mental health as it is for your physical health.
With ever-increasing awareness around the importance of maintaining and improving good mental health, there are lots of things that can help, such as: mindfulness, relaxation, exercise, using apps and online courses, listening to podcasts, and managing stress.
The NHS website has a section on 5 steps we can all take to improve our mental wellbeing: www.nhs.uk/conditions/stress-anxiety-depression/improve-mental-wellbeing/
"Life's Too Short" - Ross, a young adult who has SMA Type 2, gives his five top tips to help improve a low mood: www.smauk.org.uk/lifes-too-short
"We’re all human, we all have bad days - sometimes all you need is a little shove in the right direction."