After continuous hours of crying and an array of unexplainable bruises my mum took me to A&E at our local hospital. It was only after my mum was separated from me and ‘taken aside’ by social services that she was informed I had mild haemophilia. We were referred to St Thomas’ Hospital Haemophilia Centre where my diagnosis was corrected.
The emotional impact of the diagnosis on my mum is something that has stuck with her. Whilst I am grateful she can recall my diagnosis story so well, I am very conscious of how this affected her mental wellbeing. It goes to show that living with a rare disease can affect the whole family. The whole ordeal probably wasn’t helped by the fact that the head consultant at the time followed up with,
‘we have run the tests Miss Pembroke, you aren’t a carrier, there is no family history, quite frankly you had more chance of winning the lottery.’
I didn’t understand why I had to have needles poked in my veins. So much so that it often required someone to pin a crying and screaming me down in my high-chair whilst my haemophilia nurse taught my mum how to administer my treatment intravenously. Eventually I overcame my needle-phobia (as did my mum). By the age of eight, I had learnt to self-treat, after a year of lunch breaks in the school piano room with my nurse. I missed my veins countless times, cried countless times, and tried again and again until I got there. Learning to self-treat was a high for me, but simultaneously I was reaching the age where I became aware that I was ‘different’.
As a teenager, I struggled with my haemophilia physically and mentally. I realised haemophilia stopped me from doing certain things. Football, rugby and other contact sports were a no. It wasn’t worth the risk to my joints, but I wanted to fit in and play. So, I did, and more often than not I bled. I got lazy with my treatment at times, skipping doses, and guess what? I bled. There were good times, I played ‘safe sports’, did my treatment on time, but guess what? I still bled. It happens.
Constant throbbing and stabbing pain in joints and muscles leaves you immobilised and unable to do basic tasks at times. The physical effects of an internal bleed are obvious, but the mental impact can be equally severe. Feeling helpless, useless and fearful, all cross your mind. You try to stay positive, but sometimes you just reach breaking point. My mum was my support. We cried together, laughed together, and faced my haemophilia together. Now, at 24, I have handled my haemophilia independently for a many years. My mum deserves the break!…But she still nags, ‘Luke have you done your treatment? How’s your ankle? Are you going to see someone about it?’ But she’s a mum, what do you expect?
Living with haemophilia really has tested my mental mettle. At times I broke, and I’m not ashamed to admit this. The important thing is that I built myself back up. I still have my demons. I get upset that my ankles are irreversibly damaged, I get angry that my condition stopped me pursuing a career in the army, I get sick and tired of jabbing myself with needles, and I worry if it will affect my relationships. Mental health is something I will always deal with in relation to my haemophilia. The difference now is that I am more confident, I am a pro at managing my condition, I have found ways to positively relate to my haemophilia, and I am not afraid to speak about important issues.
Living with a rare disease is no walk in the park! Delayed diagnosis, chronic pain, intense treatment, the list goes on. These take their toll physically but it really shouldn’t come as a surprise that they can have a mental impact too! Rare Disease UK’s report ‘Living with a rare condition: the effect on mental health’ showed that because of their or their child’s rare disease 95% of respondents felt worried or anxious, 93% have felt stressed, 90% have felt low, 88% have felt emotionally exhausted and 70% have felt at breaking point. It emphasises the need for further support in the rare disease community.
Finally, I’ll end by saying that you should never feel ashamed or worried to talk about your mental health. In my time as a patient advocate, those living with a rare disease are some of the most resilient and inspirational people I’ve met, and all agree there is a mental burden associated with their conditions. Don’t suffer in silence, speak up and be heard!
Luke is a patient advocate living with severe haemophilia B and works freelance in healthcare communications. He has a YouTube channel, ‘The Clot Thickens‘, where he posts videos about his experiences living with haemophilia and other things he gets up to in the world of patient advocacy. Luke is also a Youth Ambassador for The Haemophilia Society UK.
You can also find him here:
Facebook – @TheClotThickens
Instagram – the_clot_thickens
Twitter – @ClotThickens