The Forgotten Voice – living with Duchenne as a sibling

Hazel has written this piece for Action Duchenne to help fellow siblings of young people living with Duchenne to know they are not alone.

My name is Hazel. I am 30 years old. I live with my husband, son and 2 dogs. I enjoy going on long dog walks, reading and a nice hot bath after a long day! I am very lucky to live an idyllic, normal adult life.

As a child though, my life was a little bit different to the average person’s.

I was like you. I had a brother who had Duchenne Muscular Dystrophy. His name was Darren. I was his older sister and we were very close. Darren enjoyed many things but his absolute favourite interests were music, musical theatre and sport. Growing up, we would spend so much time together.

Having a brother or sister with DMD is very hard work. It is hard for the person who has the condition, it is awfully hard on your parents but it is also, exceptionally difficult for you – the sibling. I can say from first-hand experience that I know exactly what you are going through and I want to say one thing to you:

It is OK to feel whatever it is you are feeling. None of it can be helped. I know you understand all the reasons why things have to be the way they are but you are still you so, let’s get some of those ‘honest’ feelings out there.

It is OK to feel JEALOUSY – Unlike other siblings who squabble to their parents about not receiving as much attention as the other, your brother or sister is actually getting more dedication. There is constantly something to do whether it be a hospital visit, physio appointment, charity exercise or just picking up medication! Every part of your day, in some way will involve your sibling’s disability.

It is OK to crave ATTENTION – Because your brother/sister will often receive attention from well-wishers or similar, it can sometimes be the case that your opinion or needs are not immediately put to the forefront of everyone’s mind. This is not the fault on any person nor do you wish to make a ‘scene’ about something trivial so, you accept and carry on.

It is OK to feel SAD, CONFUSED OR ANGRY – This is an important one. When I was growing up, I wanted so badly to wave a magic wand and make all the bad stuff go away. I wanted to take the stress away from my parents. I no longer wanted to see my brother suffer when he got ill or struggle in the ways he did, as the years passed. I wanted to live the ‘normal’ life absolutely everyone around me got to receive, except me and my brother. I knew no different apart from living this life where there was always a little bit of stress or anxiousness. It sometimes made me feel sad, angry or confused. A magic wand was the answer…………or was it? If you are ever feeling like this I used to think of Harry Potter. He was an orphan boy who lived an horrendous life, as a young child. His parents were dead and no amount of magic could bring them back to life. Even in the fictional word, magic cannot solve everything. This always used to help me rationalise my feelings if they became a little too difficult to cope with.

It is OK to not UNDERSTAND everything – Are you are Professor in Biology? Nope, me neither. Therefore, I only ever understood what I needed to. Even now, there are certain complexities I do not fully grasp but the person behind the condition is far more important to care for, than the condition itself.

It is NOT OK TO FEEL ALONE – Quite often, you may feel like you are the forgotten voice in what can often feel like a struggling situation. You do not wish to make a fuss because there will be so much going on around you, the last thing you want to do is give your parents more stress to think about. Instead, you will continue helping as and when required. But you do not need to. There is now some fantastic support out there for people, just like you! You do not keep your feelings hidden or trapped inside.

Action Duchenne is a charity which aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy. The charity is led by Duchenne families so, they understand what you are going through.

Finally, I will say this to you. I have never met you and more than likely, never will BUT I do know this about. You are strong, thoughtful and an absolutely beautiful human being. Allow yourself to feel those negative emotions. It is OK to feel them. Everyone does, occasionally and you are coping with your particular situation, spectacularly but there is support out there for if you are not.

xxxx

Further reading

• Help and support for siblings

• Family stories