At the end of September, Global ITP Awareness Week rolls around, and it can be a strange time for someone with ITP; it feels slightly odd to have a spotlight on the thing that is often so private and rarely spoken about. I try to spread as much awareness as possible about ITP, but that comes with a difficult set of emotions to deal with, which is an infinitely more difficult task. I think no matter how much time passes, I will never quite feel the same about ITP on any given day – it’s truly a roller coaster.
I was diagnosed with ITP when I was sixteen years old and have been living with chronic ITP for over three years. ITP has without a doubt changed my life and shifted my perspective on the world.
With a condition like ITP, there tends to be a catalyst that either sets it off or leads to it presenting itself. My ITP first presented after I was sick with a cold following the completion of my lifeguarding course. Now, the signs that my platelets are dropping are obvious to me, but when I was first diagnosed, I had no idea what to look for. The biggest clues were constant nosebleeds, bruising all over my body, and tiny little blood-red dots from head to toe (which I now know is petechiae). After getting some standard blood tests I was admitted to the hospital and spent three nights there. It was an incredibly overwhelming experience at the age of sixteen, but my true journey began in the months that followed my initial hospitalization.
I had to give up swimming, which was a huge part of my life and something that I thought I would do for a long time. It was very frustrating to have to stop the sport I love because of something that was out of my control. I had planned so much of my life around swimming and it felt like losing a version of myself. I had to reimagine what my life would look like and how I wanted to spend it. Like many teenagers, I felt lost, but feelings of uncertainty were fueled by my diagnosis and the changes it brought to my life.
About a year after my diagnosis, the COVID-19 pandemic began, and I had to spend many months alone and with few distractions trying to come to terms with what the rest of my life would look like. However, there are always silver linings and being in lockdown allowed me to fall back in love with books and reading.
Being diagnosed with ITP at such a young age was especially difficult. My diagnosis came at a time that is often seen as the “best” years of your life, when you begin to find your independence, freedom, and even yourself. It was incredibly easy to get caught feeling like I was missing out on fundamental life experiences, and in some ways I guess I was. I had to learn to live with a chronic illness and spent a lot more time with myself – neither of which is easy.
I spent a lot of time and energy at the beginning of my diagnosis going back and forth between feeling anger and misery – anger at the world around me and how unfair it all felt, and good old-fashioned misery at the situation I found myself in. As lovely as it would be to say that three years later, after much reflection, I no longer feel these emotions, that simply isn’t the case. I still feel anger and misery when it comes to my ITP, but now these feelings creep up less frequently and usually after a relapse. Because ITP currently has no cure, it’s easy at times to feel helpless and stuck. Plus, ITP is different in each and every person, so there is absolutely a learning curve for each individual after being diagnosed. Personally, I found that fatigue is one of the biggest challenges of living with chronic ITP, especially during university. However, having a supportive family and amazing and understanding friends makes a world of difference, as does finding communities with other people that have ITP.
Although ITP has made for some of the hardest years of my life, and I’m sure there are more to come, it has allowed me to mature, understand myself better, and gain a new perspective in life. I’m grateful to have been diagnosed when I was, and to have the chance to spread awareness about ITP.