October the 10th is World Mental Health Day so today’s blog is about how Duchenne can effect our mental well being. We look at the value of gaining support from ‘experts by lived experience’ – i.e. others who have DMD.
As explained by one of the most prominant programmes to challenge stigma and discrimination, ‘Time to Change’:
“We all have mental health, like we have physical health. Both change throughout our lives. And, like our bodies, our minds can become unwell’. [ http://www.time-to-change.org.uk]
When we hear about ‘Mental Health’ the focus can often be on specific health problems – such as a anxiety, depression, stress, bipolar etc. However, many people experience both physical and mental health problems – and they can also impact each other.
Someone who has Duchenne might also have other medical problems which affect them – including mental health illness. Some of these conditions such as anxiety or depression might be brought on by having dystrophy or may be completely unrelated.
Things which can help our mental health.
- Knowing that it’s ok and not shameful to have a mental health problem as well as DMD.
- Medical profession, family and friends understanding that our mental health problems are not always caused by dystrophy – but could be a separate condition.
- Identifying if our mental health can be improved by better support, equipment or services etc.
- Experiencing the value of peer support with a good balance of experiences – good and bad.
- Accessing medications to help our mental well being which work along side existing medications e.g. we may want to relieve anxiety but don’t want the drowsy effects to be heightened by our DMD.
- Feeling in control about how we live our lives and how we are supported.
- Enabling assistants, carer and families to support and understand our mental health and emotional needs.
- Having support when grieving for family or friends.
- Emotional and psychological support at critical points in our lives e.g. losing our ability to walk, eat, breathing with ventilator support, moving away from our parents into our own home etc.
- Psychological support at the end of our lives – emotional and spiritual care according to our wishes.
- Enabling family carers to have a break to ‘recharge’ and improve their mental well being too.
- Understanding stress and coping mechanisms
Our physical impairments are very much visual – but for some adults, the hidden ones (as mental illness can so often be) might be the hardest to manage. People’s misunderstandings of what it’s like to live with a hidden illness, can make it all the more difficult.
I have a type of Limb Girdle Dystrophy which used to be called ‘Duchenne-like dystrophy’ because progression rate in adults is pretty much identical. Here lies one of the mental challenges it causes – it is very rare and so you miss out on connecting with people experiencing similar lives and difficulties.
At times I have felt very alone in managing the effects of progressive muscle weakness. This in itself can lead to more days than you would like feeling utter despair and up against a brick wall. A dead end in the blackest of nights. It’s a very dark and unhappy place. I have never felt sad or angry at having my impairment – just complete frustration at very specific times. An example would be when I had respiratory failure and needed ventilation. I was sent home with my Nippy vent after just a few minutes trying it in the hospital. I went through hell with facial pressure sores from the mask not fitting right, leaking, being in unbearable pain but not being able to take it off or I couldn’t breathe. That is the type of problem that brings back the despair – stuck between a rock and a hard place. My husband and I begged the hospital to understand my skin was rubbed away to the bone – but no help came. I wanted the machine to keep me alive – but at the same time the pain made me wish I was dead. These are the occassions where I mentally crumble – then I have a period of mental ill health to deal with and the feelings this brings.
I came to realise, that I needed to look not for people with exactly the same impairment to find out how to manage this situation (because there are so few in the world) – but people who were IN that situation. I started talking to a range of people (many without dystrophy) who used ventilators and also CPAP machines and with a bit of personal creativity in making my mask comfier, I got back into living again without the pain and pressure sores.
The most help – even if just a listening ear or the chance to ‘vent’ (pardon the pun), came from people with other types of dystrophy and I have migrated more and more towards people with DMD as this is the group I have the most in common with.
There are occassions where not having exactly the same faulty genes does give me the feeling I’m still considered an outsider. Also, being a woman in a male dominated DMD world has its moments and can still be isolating when you have ‘women’s problems’ you need advice about! However, surrounding myself with people in the same boat helps me mentally and physically – and I hope mutually the things I share will help others.