For the past few months, my ankles have been causing me more pain than usual. Like many people living with haemophilia, pain is something I have learned to live with. I adapt where I can, push through the difficult days, and tell myself that things could always be worse. What I had started to realise, though, was that the pain medication I’d been prescribed just wasn’t cutting it anymore. The pain had begun to affect my day-to-day life more than I wanted to admit. It was always there, sitting in the back of my mind. Even on special days, when I should have been enjoying myself and making memories, there was always that underlying awareness of my ankles and how much they were hurting. It had started to put a dampener on moments that should have been purely happy.
Recently, I had a routine appointment with my consultant. Nothing out of the ordinary – just one of those regular check-ins that have been part of my life for as long as I can remember. But when they asked me how I was getting on, I found myself stopping and really thinking about the answer. It made me realise just how much I had been holding in. Somewhere along the way, pain had become my normal. I had become so used to arthritic ankles due to years of bleeds and adjusting my life around them that I stopped recognising how much they were affecting me. I wasn’t really talking about it; I was simply getting on with things, as I’ve always done. Living with haemophilia teaches you resilience. You learn to adapt, to carry on and to make the best of difficult situations. But sometimes resilience can come with a downside. Sometimes it means we minimise what we’re going through or convince ourselves that because we are coping, we don’t need to talk about it.
Sitting in that appointment, answering what should have been a straightforward question, I realised how much I had normalised the pain and how rarely I had allowed myself to acknowledge the emotional side of living with it. The frustration, the tiredness and the quiet adjustments that become part of everyday life. What struck me most, though, was how amazing my haematology team were. As soon as I explained how things had been, they listened. They reassured me that I didn’t need to just put up with life like this and immediately prescribed new medication, with a follow-up appointment arranged to see how I was getting on. More importantly, they reminded me that I should always talk to them. I didn’t have to struggle in silence or wait until things became unbearable. Help and support were there; I just needed to be honest about how I was feeling.
It also made me wonder how many others in the bleeding disorders community do exactly the same. How many of us quietly carry things because we’ve become so accustomed to doing so? My ankles haven’t suddenly improved, and I don’t have all the answers, but that conversation reminded me of something important: just because something has become normal doesn’t mean it isn’t difficult. And talking about how we’re really feeling isn’t complaining, it’s being honest. It also made me think about the people around us. If you know someone with haemophilia, please understand that we don’t always talk about our aches and pains. For many of us, they’ve become part of everyday life. We adapt, we carry on, and sometimes we forget ourselves just how much we’re dealing with. That doesn’t mean we don’t struggle, and it doesn’t mean we don’t need support. We may not always want advice or answers, but knowing that someone is there to listen when we are ready to talk can mean more than you realise. Sometimes, what we need most isn’t for someone to fix things – it’s simply for someone to understand, to be patient, and to be there when we need them.
Perhaps the biggest lesson I’ve taken from this is that we don’t have to carry it all alone. Whether it’s our haematology team, family, friends or those closest to us, there are people who care and who want to help. And perhaps it’s okay to admit that sometimes, we’re carrying more than we think.
