What does the term Disability mean?

It implies you are not able, that you are unable to do things, that you are impaired in some way. This term is used to stereotype those who are physically or mentally disabled, I would argue however that this is wrong. I do not feel disabled, physically challenged yes, but not disabled from life. Anyone can be disabled, whether by stress, depression, addiction or the general struggles of life, society often forget this when it uses this term.

Disabled individuals are often dismissed, people often make assumptions of what you can and can’t do before giving you a chance. Disabled individuals have a lot to give, a different perspective on life that no one else has.

How does the progressive nature of Duchenne impact me?

Sometimes I feel that people don’t see the severity of my condition as I can still walk, forgetting that Duchenne is a progressive condition, with the deterioration of muscle over time that is 100% fatal. I can no longer run, I can’t walk as far, my balance is poor and I feel the cold more than others. It is a deadly serious condition, this is not an over exaggeration.

Although Duchenne affects my physical health it can impact upon your psychological health as well, I know that in the past I have had depressive feelings, feelings of isolation. Often I feel that people misunderstand progressive conditions, some people just don’t want to know and you know what, I don’t expect them to; I just expect that people at least try to understand, to empathise. Sometimes you have to just accept that some people just won’t understand. Ultimately people don’t have to understand your journey because it is yours.

Putting on a brave face

We all put on a brave face, I know I certainly do, I know that I just ‘get on with it’, but this does not mean that I have bad days were I feel frustrated and angry at the situation.

I believe that my faith has helped me through these times. Despite of my physical condition, I know that I am more than this. In a world that often overvalues physical heath, I known that I am not defined by having Duchenne, but by my faith.

Approaching life with a positive outlook

This doesn’t make it any easier, I still question why, imaging what things would be like if I didn’t have Duchenne. It is important however, as hard as it is, to live in the moment and focus on the things you can do, trying to live life with a purpose, otherwise these thoughts will eat you up. I have a sheer determination that Duchenne will not disable me from living life, approaching life with a positive outlook.

It is important to try and be assertive in your actions otherwise people will walk all over you, to assert yourself and be known for who you are and what you stand for.

Want to help give hope to others with Duchenne?