Our Youth Ambassador Scott has shared his story of how haemophilia impacted his mental wellbeing
Written by Jess Milton, February 6, 2020
It was very difficult as a child to understand why I was being treated differently to everyone else.
Why I was constantly in and out of hospital and my family were not. Trying to understand why I needed to have regular injections, and screaming down the hospital ward when I did.
It really started to take its toll through adolescence and puberty.
Having haemophilia in school was very, very hard. I had to sit and watch from the sidelines whilst my classmates played contact sports. This quickly singled me out. School was challenging enough but being seen as delicate and fragile didn’t help.
I began to grow sick of having to explain myself to people, sick of feeling like the odd one out. So I decided I just wouldn’t take my treatment. I couldn’t bear the thought of an injection and if I didn’t do it, it would just go away.
This made things worse, of course. I stopped telling anyone when I could feel a bleed coming on. I’d try to get out of school and do anything to avoid standing out. I’d stay in bed filled with pain but wouldn’t do anything about it because this would mean having an injection. This would mean I had Haemophilia. Eventually, I had to go on crutches for a month before I was even able to walk again. This is when I started to realise that this wasn’t working. After this, I started to treat myself again but only on demand, so I could avoid needles.
When I reached my mid teens, I began to accept prophylaxis. I still missed a lot of school, but instead of trying to blend in, I began lashing out in every way I could. I’d get in fights at school and outside, and damage my joints in the process, causing more bleeds. I felt completely alone.
Finally, as I reached my twenties, I stopped lashing out and started looking after myself. Even when I’d started taking my treatments properly, I would keep my bleeding disorder to myself. No one else had to know – it was my problem and I could handle it on my own.
Looking back, I really wish I’d talked about it. I wish I could have embraced it and not let it control me. I would keep my haemophilia from everyone, including romantic partners. I didn’t know how to tell them and I was worried I’d look weak and helpless. Sometimes I wondered if I should even bother with relationships at all. I missed so many dates because I had a bleed or I was scared to take my treatment.
I have come to understand and accept that I have a bleeding disorder. It hasn’t been an easy ride but I feel so much happier and in control now. It starts with acceptance and understanding that you’re not the only one going through this. That’s partly why I chose to become involved with The Haemophilia Society. It helped me meet others who have been what I’ve been through and who feel the same way!
Moving forward, I want to work to make sure that everyone who has a bleeding disorder can have a safe space to talk about their mental health. Somewhere to be open and know that it’s ok to talk about it. That’s why #TimetoTalk is so important – talking about it is the first step to living your life the way you want it.
You can find out more about #TimetoTalk, the campaign to change the way people think and act about mental health problems here.