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Your heart-warming words of wisdom on growing up with a muscle wasting condition

6 March 2024

At the beginning of this Disability History Month, Jack and Lauren shared a blog about what you said about your experiences of Physical Education in school − following a survey they carried out on growing up with muscular dystrophy. They also reflected on their own experiences. As we continue to mark Disability History Month, Jack shares the helpful advice you had to give others growing up with a muscle wasting condition.

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This Disability History Month, we really wanted to give people an opportunity to share what they have learned over the years, their knowledge and experience, with the rest of our community.

As part of our survey, we asked what someone living with a muscle wasting or weakening condition would say to their younger selves, or someone in a similar situation. We received so many heart-warming words of wisdom.

Pedro age 31 wrote, “I would love to be able to tell my younger self that you will eventually know what’s wrong and there will be opportunities. Your feelings of difficulties are normal for you, and you will eventually find a way to learn to live with it.”

“Keep talking to people about what you’re going through and how you’re feeling. Don’t bottle it up, reach out. You’re not alone.”

J MacMasters

Learning to live with it” is such as great way of thinking about the process of growing up with a muscle wasting or weakening condition. As time goes on, you learn what works and what doesn’t. It can seem so overwhelming at the beginning, but over time you become more of an expert on your condition and how it affects you.

J MacMasters wrote, “Just because it progresses in a certain way for one person, doesn’t mean it will for you. Be yourself and do what you feel you’re comfortable and able to do, trust yourself. Keep talking to people about what you’re going through and how you’re feeling. Don’t bottle it up, reach out. You’re not alone.”

Robyn, 37, told us that you’re not imagining your struggles but you can find online support,

“It’s ok to be scared but don’t be alone. Go on forums or Facebook and find people who can help your journey.”

This is great advice from Robyn. to make sure that you’re reaching out to others in a similar position who can help you in that journey. Go to our website to find people to talk to.

Starting to use a wheelchair can be a big and scary moment for many. But it doesn’t have to be, it can be something positive and liberating. This is something that was echoed by the response from Anon, 53 who said that:

“Using a wheelchair is not the worst thing that could ever happen to you, or to anyone. It will not be the end of your life but could be the start of it.”

Another big theme was the importance of perseverance. The people who filled out our survey said that doing what you can, is so important.

As Alyson, 44, wrote, “Just keep going, no matter how slow you walk or how long something takes, just keep going.” .

Charlie, 36, agrees with her, “If you can do something (walk up the stairs, stand up from a chair unaided etc., then keep doing it as long as possible.” .

We know this can sometimes be difficult and people face adversity.

Charlotte, 33, wrote that “I believe when someone is faced with adversity, they have a choice to let it define them, or let it make them stronger and more resilient. You can be happy.”

A big part of growing up is comparing yourself to others. But we all know this isn’t helpful. We all have our own unique path and set of circumstances. So many people reflected on the importance of making sure you focus on yourself and not on other people.

Emily told us, “Be patient with yourself and do not compare yourself to anyone else.”

Paul, 74, echoed Emily by saying, “Keep your pride, do as much as you can and savour each moment of enjoyment.”

Jenny responded by saying that everyone is different in some way or another, “we all have our weaknesses but most importantly we all have our strengths.”

Christine, 78, agreed, that “There are going to be things you will not be able to do or will not excel at but don’t let that stop you from having a go.”

As we finish our reflection on this year’s Disability History Month, we’ll close with the response below from Omar. Omar touches upon the importance of focusing on the people and things that matter.

“I wish I could tell myself that to stop being afraid of what others think because the only people who matter love you. I don’t think I would have listened though. So my main thing would just enjoy yourself. You can always find a way to do it.” Omar, 29

Thank you everyone who submitted their thoughts on this Disability History Month. We have read every single one and it has been an absolute privilege. They were all incredibly honest, thought-provoking and moving. Hopefully you have found them just as illuminating and poignant as we did.

“Minor plus est. Hoc modo oportet nos esse ducem. Nimis multae viae ducunt ut pereant.”

Jack Tozer
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