When I was diagnosed with immune thrombocytopenia (ITP) at 35 years of age, I was so confused. Hearing that I had to see an oncologist/hematologist, my mind immediately went to cancer. I didn’t know any better. I always associated those types of doctors with cancer.

After my first week in the hospital, I was grateful it wasn’t cancer but a blood disease. My head still spun because I didn’t know what any of this meant. I had a great hematologist when I was in the hospital, unfortunately, he was almost 2 hours away from my home. He recommended I see someone in my area as soon as I was home. The search began and I didn’t even know what I was looking for. 

Read more about HCP resources for ITP

My husband made me the first available appointment within our healthcare system. We went in with a bunch of questions and the doctor brushed all of them off, followed by “You’ll be fine” and left the room. With a blank stare, I looked at my husband thinking, what just happened?  I saw him 1 more time before my husband, and I both decided we needed to find someone else.

So, we did just that. We started to learn more about my ITP and educate ourselves. I saw 2 more hematologists before I found the doctor who knew I was scared, a doctor who listened to our concerns, and a doctor with a plan. I had him for a while and was comfortable with his approach to my blood disease.

Then we went in for an appointment and heard those dreadful words, “I’m retiring.” While I was sad to hear he was leaving, I was happy to hear about the adventures he would now be able to enjoy with his wife.

Fortunately, he knew me well and was able to recommend a doctor he thought would be a good fit for me. I immediately booked my next appointment with him and was amazed at how interested he was in my diagnosis. He asked me many questions and showed he genuinely wanted to understand my condition. Moreover, he had options for me to consider.

Every other hematologist had a constant go-to treatment method with me, but my new doctor shared other treatment options. He spent over an hour with me on my appointment, a first in my experience. He was a keeper, and young so I won’t have to worry about him retiring anytime soon.

How do you find the right hematologist though?  My experience, it’s based on many things. ITP is rare and while it’s known about, not many hematologists treat it. Often, we know more about our disease than doctors do.

I made sure that the doctors we were looking at specialized in blood diseases.  This was key for me. With most of their patients having cancer, not all are up to speed on ITP. I also learned to find my voice (with the help of my husband).  Growing up, I just listened to what the doctors said and followed their advice. With ITP, that’s not always the best approach.

Learning how to voice your concerns and advocate for yourself is huge. Be honest and open and don’t be afraid to speak up. For them to fully help you, they need to know what is going on with your body. It’s also learned that it is OK to say no.  If the treatment plan they provide isn’t something you are comfortable with, tell them. You and your Hematologist need to be on the same page and it’s OK to say no or question their approach, respectfully of course.

I never questioned doctors as much as I did until I was diagnosed with ITP. 

To others struggling with ITP: finding the right hematologist can make a world of difference. This is your body, your health, and your future. You will need to become your biggest advocate, and that can be empowering, which is always a good feeling. You know your body better than anyone.