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Global ITP Awareness Week: My Life with a Chronic Blood Disease

26-30 September is Global ITP Awareness Week. ITP stands for Immune Thrombocytopenic Purpura; a rare autoimmune condition that affects around only 200,000 people globally. The platelets (that clot the blood) are attacked which can lead to excessive and internal bleeding. I was diagnosed at sixteen years old and have since 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 illnesses like ITP, there tends to be a catalyst that either sets it off or allows it to present itself. For me, it was a flu-like cold after completing my lifeguarding course. Now the signs that my platelets are dropping are obvious to me, but at the time 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 (this is called the purpura rash). After getting some standard blood tests I was admitted to the hospital where I spent three nights. It was an incredibly overwhelming experience, however, the months that have followed is where the true journey began. 

I had to give up swimming, which was a huge part of my life, and something I thought I would do for a long time. It was very frustrating to have to stop doing the sport I love because of something that is out of my control. I felt very lost for a long time after this, which was fuelled even more by Covid-19 happening not even a year after my diagnosis. However, there are always silver linings and lockdown allowed me to fall back in love with books and reading. 

Being diagnosed at such a young age was especially difficult because it is a time period that is seen as some of the best years of your life, in which being independent, reckless, and free is seen as the norm. This means that it was incredibly easy to feel as though I was missing out on fundamental experiences growing up, and in some ways 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 in the beginning going back and forth between feeling anger and misery. Anger at the world around me and pure old-fashioned misery at the situation that I was in. After three years I still feel these two emotions in regard to ITP, but much less frequently and usually after a relapse. One of the biggest contributions to these feelings is that ITP currently has no cure, so at times it is easy to feel helpless and stuck. Furthermore, it is different in each and every person, so there is absolutely a learning curve for each individual. Personally, I found that fatigue is one of the biggest challenges of living with chronic ITP, especially during university. However, having a supporting family and amazing and understanding friends makes a world of difference. 

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Although ITP has without a doubt 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 am so grateful to have been diagnosed when I was and have the chance to spread the word and bring about awareness about ITP.

Image courtesy of Deniz Yalcin.