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