This ITP Awareness Month, let’s focus on having hope while moving forward

September always means a great deal to me every year because it’s ITP Awareness Month, and I’ve lived with immune thrombocytopenia (ITP) since I was 8 years old. Over the years, I’ve experienced hundreds of blood tests, doctor appointments, treatments, restrictions, and perhaps most significantly, the uncertainty that can come with a platelet count that doesn’t always behave as I’d like it to.

That’s why awareness matters so much to me, and writing this column is vital to my mission of raising it. I want more people to understand what ITP is, but I also want those who are living with it, particularly anyone newly diagnosed or going through a difficult period, to know that there is plenty of life beyond those platelet numbers.

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So, in honor of this year’s ITP Awareness Month, the following are five things I’d tell anyone feeling a little glum right now about their bleeding disorder.

1. Try not to let your platelet count become your entire identity.

This is easier said than done, and I’ve definitely been guilty of this on more than one occasion. I know how easy it is to attach your mood to your latest platelet count. A higher number can feel like a victory, while a drop can leave you worrying about what happens next.

But you are so much more than a number on a blood test. ITP is something you live with; it doesn’t have to become everything you are.

2. Ask the questions, even the ones you think are silly.

Another thing I’ve learned over the years is that understanding what is happening can make things feel less frightening.

Daisy Souster holds a copy of her book, “I Bruise Easily,” about a young girl who is diagnosed with a rare blood disorder. (Courtesy of Daisy Souster)

If you don’t understand why you’re having a particular test, what your results mean, or what a treatment is supposed to do, ask. I used to be so afraid to “annoy” the doctors and nurses, but now I don’t hold back. That means I walk out of the room knowing that I did all I could.

And if you leave an appointment and suddenly remember a question you meant to ask, write it down for next time. I’m 34 and have lived with ITP for 26 years, and I still have questions about it.

There’s no prize for pretending you understand everything. After all, we’re not scientists.

3. Find your people.

Having someone who understands you can make an enormous difference. That might be another person living with ITP, an online community (I particularly like some Facebook community groups), a charity such as the ITP Support Association, your family, or simply a friend willing to listen when you need to say, “I’m fed up with this today.”

You don’t have to talk about ITP constantly, but knowing there are people who get it can help.

4. Allow yourself to have bad days.

I’m very passionate about sharing hope around ITP, but I don’t think hope means pretending everything is wonderful all the time.

Sometimes having a chronic condition is frustrating. Sometimes you’re tired of appointments. Sometimes you’re fed up with explaining it. Sometimes you just want your body to cooperate. You’re allowed to feel that.

5. Remember that life can become much bigger than ITP.

If I could tell my 8-year-old self one thing, it would probably be this: There will be a time when doctor appointments aren’t the biggest thing happening in your world. They may be currently, but they won’t always be.

I grew up. I went to college. I built a career. I started my own business. I got married. I became a mother. I’ve traveled, worked, laughed, worried, made mistakes, and did all the wonderfully ordinary things that make up a life. ITP has come along for the ride, but it hasn’t been allowed to write the whole story.

So, this ITP Awareness Month, let’s keep raising awareness. Let’s talk about symptoms, treatment, research, and the realities of living with a bleeding disorder. But let’s spread a little hope alongside it, too.

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.