A few weeks ago (on 22 March), I participated in the live Twitter chat on the topic of diagnosis, emotional support and mental well-being, which was hosted by Muscular Dystrophy UK. This was a further initiative taken to get a better understanding after their recently released report highlighted the “impact of diagnosis” and that in the majority of cases there is absolutely no emotional support at the time of diagnosis. Further media details here.
I wanted to take part Twitter chat so I could give my feedback on what emotional support is like as an adult with Muscular Dystrophy, and I feel so passionate about this that I need to write more on my thoughts.
We all underestimate the importance of emotional well-being to everyone, especially for those with disabilities and newly diagnosed families, let alone those with a rare disease like Muscular Dystrophy or a neuromuscular condition. When I was diagnosed with Congenital Muscular Dystrophy (MDC1A) in the mid 1980’s, we had no emotional support whatsoever.
This is something that many families have to deal with today. I don’t understand how and why this is still the case in 2015. It is vital that newly diagnosed families are able to access the emotional support they need, as according to Muscular Dystrophy UK there are only 5 specialist psychologists in entire country. The Twitter chat highlighted this, which is why I shared my top 5 tips for newly diagnosed families:
- Build a strong support network.
- Connect and work with organisations Muscular Dystrophy UK as soon as possible.
- Be very open as a family and discuss diagnosis with your child as young as possible, so you can live your life to its fullest potential.
- Always challenge authorities to get the help you need and keep fighting for your rights.
- Have a sense of humour, stay positive (by avoiding negativity and negative people) and never lose hope.
Although, I strongly believe it’s not only about newly diagnosed families, but also very important to support the mental health of every person with neuromuscular conditions throughout their entire life. For example, at university I had to see a counselor for a while because I had emotional trouble fitting in with my class and was dealing with a lot of issues. I still would like psychological support and think it is needed to deal with all the issues as an adult with a neuromuscular condition, as well as the fact that I’m severely disabled. However, I cannot get any support at all, as everyone only seems to care about cute and cuddly kids.
There is a huge disparity that exists between child and adult neuromuscular care, and Muscular Dystrophy UK are trying to fight this. In my opinion, what hits me as a adult the hardest is: I cannot participate in social activities when I want, I cannot get job 3 years after university, I cannot find love or it seems impossible to build a relationship with someone, I cannot ever be fully independent as I wish having to rely on others for all physical tasks for the rest of my life (even for such personal care things like taking a piss), and I can’t go everywhere I want, et cetera. I’m sure there must be other people who are going through this too.
It is my physical needs that seem to take the limelight and doctors / specialists tend to only focus on my complex physical needs having a rare condition. My mental health has no bearing at all in terms of care or support other than the yearly CCG care review where someone just asks me if I am suicidal or not to check off their list of questions.
A lot of the need for emotional support for disabled people can come from social anxiety, which I often experience as well. For my first year of university, I decided to be a lot more outgoing and just participate in social activities. I enjoy helping other people, however it often becomes quite tough to help others or socialise if my mental needs are not being met. I understand that some people with disabilities don’t need a counsellor or emotional support because they have learned ways of managing these issues, but it would be useful for even these people to have an option of someone to speak to about psychological and emotional challenges. Everyone, whether disabled or not, has an emotional and psychological spectrum during their lives that ranges from depression to elation. Although the degree of these highs and lows different depending on the person, these lows exist and therefore need to be addressed.
Stigma. It’s common knowledge that there is still a great deal of stigma attached to mental health issues, as demonstrated by the recent Germanwings tragedy. The UK mental health charity Mind wrote an excellent response about the media coverage related to this. This stigma is doubly compounded for a disabled person because of assumptions, wrong or right, that people have about someone with a disability. When I was younger, and even now, people assumed that I have limited cognitive abilities when in reality my disability is purely physical – even if the mental health struggles that have resulted are not.
What do I think would help?
- Open and frank discussion on the streets, in the media, everywhere about mental health to take away any stigma.
- Changing perceptions of mental health so that people understand that mental illness needs to be treated like physical illness.
- Better funding.
- Greater collaboration between disability charities and mental health organisations
- Mental wellness needs to be incorporated into care packages as much as physiotherapy is supposed to be.
One way I am trying to change things for the better is by working with the Muscular Dystrophy UK and being a part of their new Community Peer Support Group. I attended the inaugural session for this on Tuesday. Hopefully, I can collaborate with them and other organisations to make positive improvements in supporting the mental health of disabled people and their families.
Let me share an anecdote that sums up a lovely way to look at it: My sister’s Hungarian colleague told her today, that the Hungarian word for mental health translates to something like “mental hygiene.” Exercising regularly is an ideal that many people would like but often don’t manage; but brushing your teeth and showering regularly is considered a necessity. Why don’t we think of mental health in this way? I.e. something that is essential and takes regular work.
Listening to “Pardon Me” by Incubus