[Read] Sibling Interview with Caitlin McAuley

Conor and Caitlin McAuley

Tell us about you and your sibling.

My name is Caitlin. I am 23 years old and I live in Co. Meath. My twin brother Conor has Duchenne Muscular Dystrophy and was diagnosed at age 3. Conor is a huge advocate for people living with DMD and he truly is my biggest role model. 

What is your relationship like with your sibling?

Growing up, Conor and I struggled to bond. Of course we always got along well but in comparison to his relationship with my sister, our relationship wasn’t as close. I think it was difficult for him as we were both the same age, growing up in the same household and had completely different circumstances. As we’ve gotten older, we’ve just gotten closer. Conor is genuinely my best friend and although we argue and annoy each other like all siblings do, I genuinely think the world of him.

What is it like for you to have a sibling with a neuromuscular condition?

It has been difficult growing up with a sibling with a neuromuscular condition. I think family and friends and their struggles with learning to cope with a condition such as this, can sometimes be forgotten about. Of course Conor’s health struggles have impacted him the most but it has definitely deeply impacted my entire family in so many ways. It was most difficult for me when I was a child as I didn’t really know what was happening, I knew things in our house were different to my friends houses and all I remember is just feeling sad whenever things going on with Conor were brought up.  I was a very angry child, I felt constantly frustrated and sad and unfortunately for me, all of it came out as anger at home. In school I felt fine and like I was most myself but at home I really struggled. It’s incredibly confusing as a child, I don’t really know if I was sure what was going on at all if I’m completely honest. As I’ve grown up, I think it’s been tough as Conor’s health has become worse with age however, I understand his condition better now. I am also really close with my family and I think all of us have just learned how to cope individually and take things day by day.

What are some of the memories you have growing up with a sibling who has a neuromuscular condition?

I have lots of memories with Conor throughout my childhood, some of these are really bad and some are my best memories. It’s difficult growing up with a sibling with a neuromuscular condition as there are huge highs and very low lows. One specific memory I have is when Conor got these designed wheels for his wheelchair that had fish all over them. As a child I was so jealous. I wanted a fish themed wheelchair too. It’s so innocent when I think back. There are also some really sad memories that even now I struggle to think about. I used to get really bad nightmares about the past too which were awful. 

What are some of the challenges you've faced?

I have faced a lot of challenges as a result of growing up with a twin brother with Duchenne Muscular Dystrophy. I was diagnosed with depression at age 16, spent years in therapy and overall felt like I couldn’t escape what was going on at home. I don’t know if anyone outside of the 5 of us living at home, really knew how bad things were. My parents have always been beyond supportive and incredible but I think due to the severity of Conor’s condition, things were always going to be difficult. I felt constantly frustrated with my family growing up, I felt like everyone else had it ‘easier’ which is unfair too as I know every family has issues/ problems that they face. I just felt angry. It was difficult too because in times where things were going really well or I was really happy, I felt like I was always waiting for the next low or bit of bad news. I also felt guilty a lot, wishing I could take all of his pain and struggles and make them mine rather than have to watch him go through all of it. I tried to be out of the house as much as possible, seeking attention in basically every other aspect of my life for some sort of validation. I was always on stage or staying late after school or basically just doing anything I could do avoid what was going on around me. I was constantly distracting myself with other things so that I wouldn’t have to think about what was going on at home. I also think I searched for control in every other aspect of my life as I felt like I had no control over what was going on with Conor. I definitely went through many periods of purposely over exercising and under eating throughout the years and I think I accidentally developed really bad coping mechanisms as I hit my teenage years which lasted into my early adult life. I genuinely believe I would be a completely different person if I didn’t grow up in the circumstances that I grew up in.

Do you have any advice for other siblings?

I think my biggest piece of advice for other siblings that are going through similar things that I am going through is to remember that you are not alone in this. It can feel incredibly isolating, even if you have other family members etc that are in the same situation. I think while growing up,  I forgot that I was not the only one that felt the way that I felt. I accidentally had made things more difficult for myself and my other family members by avoiding everything. When lockdown hit in 2020, I was forced to be with my family and face everything that I had been avoiding for most of my life. This was genuinely the best thing that could have happened for me as I got so close with my family during this time. I think it made me realise that I was not alone in my struggles and that facing what was going on rather than constantly running from it was what I really needed to do the entire time.

How has MDI helped you?

MDI has been a huge help to my family and I. There are so many great things that MDI have done for my family throughout my life however I think the most impactful was the days out with the support workers. Growing up, I loved attending the group events with other families and meeting kids my age that were in similar circumstances. The youth workers were beyond amazing (I’ll never forget Ciaran, Brian and Amanda in particular) and I really hope they understand the impact that their work has had on so many lives. We always had such a laugh with them and it made what was going on with Conor not seem as bad.

What’s something you find special about your sibling that others might not always see?

There are so many things that I find special about Conor. He is incredibly funny and kind. I don’t think many people would realise how resilient he is. Everyday he has so many things that he faces that most people would never have to worry about or face in their entire lifetime. I’ve never met someone so positive about life and his mindset is incredible. He doesn’t even realise how much his mindset and attitude towards life and the world around him has impacted my family and I. He is the reason we are all as close as we are. I am in awe of him and how he has managed to keep smiling through everything.

Conor and Caitlin McAuley

What is the best thing about your brother/sister?

I think the best thing about Conor is his sense of humour. He is accidentally hilarious without trying. I’ve also never met anyone who has his sense of humour so I think it makes him even funnier. My sister and I genuinely crack up just talking about him sometimes. Obviously, there’s so many things I love about Conor but yeah he is definitely one of the funniest people I’ve ever met. He reminds me that even when you are feeling the worst, there’s always something good to think about or talk about or laugh at.