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In the early days of Samson's diagnosis, I was so nervous about 'going on' about Duchenne. I was worried that friends and people close to me would be subconsciously thinking 'Oh, she's not talking about Duchenne AGAIN'.
This is a fear shared by many, many other Duchenne Mums that I have spoken to over the past 3 and a half years.
Why do we feel like this and why is it such a common occurrence?
I wondered if it is because many Duchenne parents 'lose' friends along the way. It is a hard journey to travel as a friend or relation of a Duchenne family. But it certainly weeds out the wheat from the chaff, to put it bluntly. You truly know who your real friends are when you are hit with something like Duchenne.
But, why was I feeling like this? When the absolute majority of my friends and family have stuck to us like glue, in fact, Duchenne has actually brought us friends and certainly an incredible community, not only through our St Neots activities, but across the whole Duchenne community.
I realised it was that I felt like a burden to people. That the emotional toil I was carrying was seeping out of me like oil. On the days that I couldn't cope you could see it in my eyes, the lack of hope, happiness, clarity. When you are someone (like me) who hates asking for help or showing vulnerability, this is a very very hard process to go through.
At my Clinical Psychologist sessions at Addenbrookes (yes, I know, I was soooo lucky to see the team there in the Paediatric department) we explored the reasons behind my fear of vulnerability,
My Psychologist took my hand around my feelings and I ended up agreeing to a week of honesty. When someone asked me 'how are you' rather than the standard. 'FIIIINE' I was so accustomed to answering, I'd be honest. 'Actually, things are pretty tough at the moment, I'm struggling to fit it all in, to balance work, appointments, the emotions of Duchenne and being a Mum, it's hard.'
I don't know what I was expecting or fearing? That the person would burn me to the ground with their scornful sneer, or that they would literally turn heel and run. But, of course, this didn't happen. Do you know what, people actually started sharing with me their experiences of mental health. People opened up and voiced their vulnerability, as though they had been saving it up following months of 'FIIIINE'.
People seemed relieved that I was talking about my mental health and that the vulnerability I was showing proved I was human!
It was a revelation. I had re-learned that showing vulnerability is not a weakness, it's actually a strength.
I was also concerned that I would need to keep up the 'front' at work, speaking with other Duchenne families on a daily basis. But in fact, the families I speak with are all going through the same daily ups and downs, with mental health being a key battle.
The other families I speak with often feel the same and hide their vulnerability with friends and family. I try to take them through the same journey that my Psychologist took me on, to show them that sharing is not to be feared, that the way they are feeling is normal and that people won't burn them to the ground (and if they do - well, they weren't worth bothering with in the first place!)
Just a Mum is Mum to Leo, Samson and Rosie. Samson lives with Duchenne muscular dystrophy.
Why we shout so loud about it