Emotional & Psychological Support
If you’ve had childhood-onset SMA, over time you may have experienced a range of emotional ups-and-downs, just as anyone may have, but your SMA and the impact it has means you’ve probably had, and still have, extra stresses and challenges to manage. Things like: 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, are just a few examples that people name. Any one of these (or other issues) can take a significant toll on emotional health and wellbeing. Some share that though they’ve lived with disability for so long - it’s part of who they are, what they know, and many things they wouldn’t change. In the down times they sometimes recognise the descriptions 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 also impact hugely on emotional wellbeing and are often similarly described as a 'chronic sorrow' created by loss.
Having a disability and experiencing the barriers there are to living life as you want can make you feel anxious, frustrated or angry. You may wonder ‘why me?’. Wherever things are at for you, 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:
Page last updated: July 2019
Support Line – their website has information on a wide range of problems. They also offer confidential emotional support to children, young adults and adults by phone, email and post, working with callers to develop healthy, positive coping strategies, an inner feeling of strength and increased self-esteem to encourage healing, recovery and moving forward with life. They also keep details of counsellors, agencies and support groups throughout the UK. Phone 01708 765 2000 or visit: www.supportline.org.uk
The Mix – provides free information and emotional support 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
Therapy & Counselling
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:
NHS website gives an overview of counselling and what you might expect: www.nhs.uk/conditions/counselling
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
Support For You & Your Relationships
Relate - provides 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. Phone: 0300 100 1234 or visit: www.relate.org.uk
Joining Groups And Activities
Talking To Others Affected By SMA
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: www.smauk.org.uk/adults-network
Looking After Your Mental Health And Wellbeing
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 mental health, there are lots of things that can help, such as: mindfulness, relaxation, exercise, using apps and online courses, listening to podcasts, 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, 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."
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 that can also support you include:
Improving Access to Psychological Therapies (IAPT) - to find NHS services in your area for treatment of low mood and anxiety:
Mental Health Foundation – provides information to help people look after their mental health: www.mentalhealth.org.uk
Mind – a mental health charity providing information and support to empower anyone experiencing a mental health problem. They 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. You can find your local Mind here: www.mind.org.uk/about-us/local-minds/
Their website offers a lot of information and online self-help guides: www.mind.org.uk/information-support
Samaritans – a listening service
Free phone: 116 123