Struggling with anxiety from a childhood ITP diagnosis

At the ripe young age of 8, I should have been worrying about times tables, which Enid Blyton book I’d read next, and whether my friends were coming out to play. But that wasn’t the case. Instead, I was learning about the dangers of having fewer than 100 platelets per microliter of blood. (A normal platelet count is between 150,000 and 450,000.)

I was diagnosed with immune thrombocytopenia (ITP) in the prime of my childhood. At the time, I didn’t understand what that meant, but I could tell that something wasn’t quite right when needles were jabbed into my arm every other day.

I knew my parents were worried. I could see it in their expressions, and it still sticks with me today, especially now that I’m a mother of two myself. The doctors seemed interested in every bruise that appeared on my little body, so I became interested, too.

Soon, I was no longer able to participate in simple childhood activities such as climbing trees, making dens with my friends, roller-skating, and playing with balls on the school playground.

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It has taken me to the age of 34 to understand how that childhood experience and diagnosis affected me. For years, I wouldn’t have described my childhood with ITP as traumatic, especially since there wasn’t a single moment I could point to as the cause of my trauma.

Instead, it was countless tiny moments: the thousands of blood tests, the constant appointments, the monitoring by general practitioners. They all added up to shape who I became as a woman and a mother.

The fear I felt as a child has followed me into adulthood. Even now, if a new rash or bruise appears, my stomach does a backflip, and the unknown eats away at me until I have been professionally checked over. If a bruise looks slightly darker or takes longer to heal than usual, I immediately think, “It’s back …”

Daisy Souster was diagnosed with ITP at age 8. (Courtesy of Daisy Souster)

I remember the devastation surrounding my diagnosis, and I think, somewhere along the way, my 8-year-old brain learned a very simple equation: A bruise means bad news for my body.

My platelet levels have been stable for about 16 years now. That is an incredibly positive thing, but the anxiety never disappears. If anything, as I have grown older and become more aware of my health, my inner voice becomes louder.

What if this symptom means something? What will my next blood test reveal? Could this disease that dominated my childhood come knocking once again?

There is a lot of uncertainty that comes with living with an autoimmune disease, and it’s difficult to explain to those who haven’t experienced it themselves. I am only beginning to recognize that my health anxiety didn’t appear out of nowhere. It has roots in my ITP.

Acknowledging this has been crucial for me. Sometimes we carry pieces of our childhood with us that we aren’t necessarily aware of, but that eat away at us mentally.

That frightened but incredibly brave 8-year-old girl who was learning about platelet counts, bruises, and life with an autoimmune disease is still here. She’s recognizing that she doesn’t always have to live in fear and is learning to cope with it. After all, fear can hold you back.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.