After conversations at different Myaware events, I have endless admiration for those who are diagnosed with myasthenia (or congenital MG) in infancy, childhood, during teenage years and as a young adult. As a mid twenty, being diagnosed with MG was bad but I had a relatively firm sense of self by then. Most days, I could brush off unhelpful/nasty comments, stares and what I read to be looks of revulsion. Now, I’m surprised when I notice one of these reactions. However, I dread to think what it would have been like for me at a younger, more insecure, age.
At one of the meetings, I was chatting to someone who has had the condition since she was tiny. She shared stories not of childhood, but of being away from home for the first time at university. Sounding similar to anyone’s worst nightmare of boarding school, her dorm mates ridiculed her relentlessly and always made her feel apart from the group. She was tormented and made to feel inadequate – from the way she spoke about it the experience haunts her still.
The rejection of who you are by others is sadly one of life’s shared experiences and both kids and adults can be cruel in this regard. As an adult you learn to shut down those who are malicious, but childhood experiences stay with you. Even as you try to understand where these comments come from and acknowledge that so often it’s about the other person and not you, it can be difficult to do this with wounds embedded from a young age.
If you have a young one with MG/CMG, it’s important to remember how hard it is to be ‘different’ as a child . Speak to them about their feelings around this and, if they won’t speak to you, encourage them to speak to Childline or an equivalent.
It’s also important to praise their strength of character for coping at such a young age and generally just lavish praise on them. They definitely deserve it. More than anything, try to recognise their strengths and tell them it’ll make them more able to cope with the difficult times in life as an adult.
As an adult, the words and feelings of being bullied about your MG/CMG may stay with you but it’s important to be kind to yourself. What would you say to a child going through the same things you did? If that is different from what you would say to a younger you, you’re being too hard on yourself. Make peace with the past by looking at it objectively – once again it’s more likely that the bullying was about the other person/people and not about you.