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Last Updated May 2024

All teenagers have a lot of change and stresses to negotiate. Your SMA and the impact it has on you means you have a lot more than most. Things like appointments and time in hospital and physical barriers getting to places can make it hard to keep up with friends. You may understandably be anxious, frustrated or angry about how hard it is to do the things you want to do. At times it can be really hard to feel good about life. At other times you may realise just how amazing you are managing all the additional things that have been thrown your way.

Wherever things are at for you, it is good to talk and not bottle-up bad feelings or worries.

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 is 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.

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.

"We’re all human, we all have bad days – sometimes all you need is a little shove in the right direction."

Ross, a young adult who has SMA, gives his five top tips to help improve a low mood – read his Community Voice here: “Life’s too short”.

You can also listen to Becca and Ross (who have SMA), talking to Ellie (an Integrative Art Psychotherapist), about: Mental Health and living with a long term condition (in two parts) from our Living with SMA podcast:

Part one:

Recorded: June 2023

Part two:

Recorded July 2023

Getting involved with organisations and groups can be really positive. You might like to look at some of the ideas in the Club, Sports and Social section.

Asking other people who have SMA how they have managed the things you are finding worrying or difficult can be really helpful.

You could:

  • join SMA UK’s ChariSMA Teenagers’ WhatsApp Network (age 13-17)
  • ask if you could talk to someone in the Young Adults’ Network (age 18-25).

Find out more here.

Young Minds – Phone 0808 802 5544 – a national charity that has lots of ideas about how to look after yourself and suggestions about where you can get help

Childline – Phone 0800 1111, Email or online chat – a free, confidential place for young people to turn to whatever problems or dangers they are 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 are going through.

Support Line – Phone 01708 765 2000 – information on a wide range of problems plus confidential emotional support via their helpline.

The Mix – Phone 0808 808 4994 – free information and emotional for young people under the age of 25. Helpline, Email, online chat and crisis text services.

Samaritans – Phone 116 123 – free, confidential, non-judgmental listening service (available through phone 24 hours a day, 365 days a year; email, online chat available certain hours).

Childnet International work to help make the internet a better and safer place; resources for young people and parents.

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 are aged under 16, you will need your parents’ permission.

If you are 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 above ‘Online Support’ section.

  • Free services:

The NHS: Children and young people’s mental health services are a range of support services available to children and young people. They are usually delivered or funded by the NHS. They can include support teams in schools or children and adolescent mental health services (CAMHS). Your GP may offer to refer you to your local specialist NHS mental health services for children and young people. It can have long waiting lists. Read more.

People aged 16 and over and living in England. You can read an overview of counselling and what you might expect, on this page. This also links to where you can access free Talking Therapies, including counselling (formally known as IAPT – Improving Access to Psychological Therapies). Again, waiting lists can be long.

NHS Scotland offers ‘Living Life’ – free phone support sessions (for those aged 16+) using Cognitive Behavioural Therapy (CBT) based techniques. You can refer yourself for an assessment by phoning 0800 328 9655. Find out more.

People aged 16 and over in Wales can sign up for a free 12-week course of online therapy called ‘SilverCloud’. This uses methods like Cognitive Behavioural Therapy (CBT) to help people manage their problems. Find out more.

Northern Ireland: Referrals for any talking therapies must go through your GP. Find out more.

  • Private (paid) services:

British Association for Counselling and Psychotherapy (BACP) – Phone: 01455 883 300 – useful guidance on counselling and how to find a suitable counsellor.

Counselling Directory – online information about different types of counselling and a directory to search for qualified counsellors.

The British Association for Music Therapy explains more about music therapy and, if you scroll down, has an online ‘Find a Therapist’ search tool.

If you are not sure who to speak to or which is the right route for you, our Support & Outreach Team is here to talk through your options.

If you are 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: