With lots of people posting about being off to uni, it spurred me on to reminisce a little on my uni days (see the above picture of a younger, thinner wilder me, with snakebite spilt down the front of my dress…classy!!). I was literally just saying to my mum the other day that it’s only been 5/6 years since I went to uni…. turns out it’s more like 8/9 years since I started uni!!! Now that’s a depressing thought, where does the time go?
Another DMD sibling recently got in touch with me about how to have those first conversations with people when they ask what is wrong with your brother, and how best to explain. So I thought there must me more of you having these same troubles, so I thought I would talk a little about my experiences and how I handled it.
When I first went off to uni a fresh faced 18 year old ready to take on the big bad world, I was determined like so many others to reinvent myself. I could be whoever I wanted to be, and that was an exciting yet scary prospect. I wanted people to know about just me, nothing else and not the fact that my brother has DMD. Not because I was embarrassed or ashamed in any way, but because so much of your life becomes about DMD in a round about way (which can’t be helped), that I wanted this experience to be just about me and nothing else… which is great at first. But eventually, conversations come around and so you find yourself having to explain your home circumstance as best you can… something you perhaps have never really had to do too much before.
I remember questions mostly being sparked by pictures that I had up in my room, followed by a slightly blank look then feeling the need to try and explain what the condition is and what is means. The more that I did this, the more I realised that the majority of people are quite respectful and understanding. Some people will ask lots of questions that at times can feel invasive, but then I politely explain that I don’t want to talk about it any further. As obnoxious as this might sound, I will discuss the parts of DMD that I am comfortable with and on my terms, not someone else’s. If I want to explain more I will, but I don’t let someone else pressure me into talking about something I am not comfortable with and that often changes depending on how I am feeling. And that is perfectly fine. While DMD might play a large part of your life even though your not the one living with it, it is not WHO you are. It is a small part of your life, that yes is pretty difficult and shitty, yes it’s meant you have dealt with adult issues from young, yes it means you had to grow up a little quicker, but at the end of the day you’re still you. And I think that applies to our siblings too. Duchenne is not who they are, it is something that (very sadly) they have to live with… and it sure as hell doesn’t stop them being a pain in the arse does it!? (because we are perfect of course!!)
Honestly, explaining or talking about DMD doesn’t really get any easier the older you get. I am nearly 28, and there are more times that when I was younger where I find it difficult to talk about, and sometimes I honestly really just don’t want to. The older you get the more you understand and as an adult, but I think people forget that being an adult doesn’t mean you cope with it any easier, in fact quiet the opposite. I find more that people some times think that because you’re older that you can ‘handle it’, but you know what… it’s bullshit. I have had more times as an adult that I have had proper paddy’s (think toddler not getting it’s own way… yes, that spectacular!) because it’s just not fair, and I don’t want to have to deal with it anymore, and I want it all to be ok…and that, in my opinion is completely bloody justified when you deal with what we have to as siblings! So have a tantrum (it does make you feel better, strangely) and don’t let anyone else push you to explain something you don’t want to, or talk too freely because your a grown up now and should be able to ‘handle it’. You have every right to say you don’t want to talk about it, or just change the conversation to the colour of the sky… whatever works best!