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Last reviewed: August 2022

SMA can mean dealing with loss of strength and mobility; experiencing serious or life-threatening episodes of respiratory illness; having to rely on other people for personal care and daily living; having to fight to get the equipment you need. Any one of these (or other issues) can take a significant toll on emotional health and wellbeing.

For many, SMA is part of who they are, what they know, and they wouldn’t want not to have SMA.

Some have down times when they may recognise the description of ‘chronic sorrow’ – a recurring sadness created by loss, which can be similar to grief and depression.

For people diagnosed later in teenage or adult years, the shock of diagnosis and the changes caused by their SMA, such as effects on mobility and independence, can impact hugely on emotional wellbeing and may be similarly described as a ‘chronic sorrow’ created by loss.

If you are struggling with your emotional wellbeing, for whatever reason, it’s good to try to talk about it and get some support. That said, it’s not easy to find the right place for this and it’s well known that there’s a serious lack of good accessible emotional and psychological support services.

Given these limitations, we’ve gathered together what we’re aware of that may be worth exploring:

Mindfulness, relaxation, exercise, using apps and online courses, listening to podcasts are all possible ways to look after your mental well-being.

The NHS website has a section on 5 steps we can all take to improve our mental wellbeing.

Life’s Too Short

In this Community Voice, Ross, a young adult who has SMA Type 2, gives his five top tips to help improve a low mood.

If you’re concerned about your mental health or the mental health of someone you care about, speak to your GP. They’ll be able to help you access help as quickly as possible. Some other organisations can also support you – open the tab below.

Getting involved with organisations and groups can be really positive. You might like to look at some of the ideas in these two sections:

Asking other people who have SMA how they’ve managed the things that are getting you down can be really helpful.

The Adults’ Network is an online community for people with SMA and is one option you might consider.

Mental Health Foundation – information to help people look after their mental health

Mind / information and support. They also have a network of 130 Local Mind organisations. Services vary, to some extent depending on what’s already provided locally. They may include talking therapies, peer support, advocacy and crisis care.

Samaritans – Phone 116 123 – free, confidential, non-judgemental listening service (available through phone 24 hours a day, 365 days a year; email, online chat available certain hours). They also have a Self-Help app to help keep track of how you’re feeling, and get recommendations for things you can do to help yourself cope, feel better and stay safe in a crisis.

Support Line – Phone 01708 765 2000  – information on a wide range of problems and confidential emotional support to children, young adults and adults by phone, email and post. They have details of counsellors, agencies and support groups throughout the UK

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

Some people find it helpful to talk with an independent trained professional about their feelings and how they’re managing day to day. It can be an opportunity to express feelings you haven’t wanted to say out loud to anyone in your family or friendship network.

You can ask your GP to refer you to counselling services, though in some areas you can now refer yourself to local primary care counselling services. Waiting times for an appointment will vary and may be quite long. If you can afford it, you may want to consider private counselling sessions.

These organisations can help you find a local counsellor:

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.

Improving Access to Psychological Therapies (IAPT) – for NHS services in your area for treatment of low mood and anxiety

NHS website – an overview of counselling and what you might expect

Relate – Phone: 0300 100 1234 – face-to-face, phone and online relationship counselling services. Fees are charged to cover the cost of the counselling session, not to make a profit. Some offer subsidised counselling sessions

These services are offered by people who have SMA themselves: 

Emotional Respite – a counselling service run by Helen Rutherford who has SMA Type 2. She offers support including to those living with a disability (or family members), or who have long-term illnesses.

Experience Change: a cognitive behavioural hypnotherapy service run by Jessica Sturrock who has SMA Type 3. Jessica specialises in anxiety related to living with a disability, particularly social anxiety, health anxiety and self-confidence.

Hear4U Counselling – a counselling service run by Oliver Pool, a counselling psychotherapist who has SMA Type 2.