At 26, they told me I had an MPN and to take a pill. So I took it.

At 29, they told me I had a different MPN and to take another pill. So I took it.

At 38, I listened to what they had to say. And then I researched, I questioned, I consulted, I paid attention to my labs, my symptoms, my daily ups and downs, and I researched some more before I decided with them how to manage my health.

“They,” of course, are the knowledgeable MPN specialists wearing crisp white coats.   Like many MPN patients, I’ve seen a lot of them. And like many doctors, they can be intimidating. They live immersed in hematological details that I cannot understand. They know what is best for patients.

Wait a minute—full stop. That’s was the 26-year-old newly diagnosed me speaking. I exist today as an informed and active participant in my medical care. By becoming involved, I gained control not only over the course of my medical treatment but also over how I feel about my health. I am less anxious—my MPN is more manageable—I feel healthier.

Now how did I get here?

Read everything you can. Start with something comprehensive like the Leukemia & Lymphoma Society fact sheets.[1] Highlight the words or sentences you don’t understand. Take the highlighted sheet with you to your next doctor’s visit. Better yet, send the highlighted sheet to the doctor’s office before your next visit so that the doctor can review it in advance and use your office time efficiently.

Next, learn the CBC lingo. Read summaries of each lab test,[2] watch videos of experts,[3] and study your own results. Collect your lab results in a notebook and review them before your appointment. Create a spreadsheet to track key results. Notice a trend? Concerned about a spike? Highlight it and show it to your doctor.

Once you understand the essentials, dig deeper. Watch experts discuss specific topics, such as drug side effects or fatigue.[4] Read abstracts of new medical articles.[5] Research potential drugs, your doctor, weird words from your bone marrow biopsy results, anything. Interested in reading a full medical paper? Contact your local library or medical college and ask if they subscribe to that particular journal. Or contact the paper’s author and ask for a free patient copy. Don’t get bogged down in the details. Read the conclusion and then work your way through the article.

Get ready to talk with your doctor. Bring key research or Internet articles with you. Jot your questions down between visits and take the entire list with you to your appointment. Even if your research answers some of the questions before you see the doctor, reviewing your whole list will give your medical team a better understanding of your current concerns. Practice saying the important questions out loud before your visit. Sound like a silly thing to do? It’s a common practice tip for those giving speeches or starting difficult conversations. A lot of medical topics sound stupid the first time you say it. But once you’ve said it five, 10 times or more, it begins to sound like a reasonable question that you need answered.

Lastly, give yourself a break. Forgot your questions while shivering in the waiting room? Take a breath and ask them next time. Feel overwhelmed with medical lingo? Reach out to patient groups and ask for help. Find too many medical articles with confusing or contradictory messages? Set them aside and pick them up again when you are rested. It will take you a while to understand this disease and to become partners with your medical team. But you can do it. That’s what my now 40-year-old self believes.

[1] http://www.lls.org/resourcecenter/freeeducationmaterials/mpd/

[2] http://labtestsonline.org/

[3] Search for example, Dr. Susan Leclair.

[4] Consider http://patientpower.info/myeloproliferative-neoplasms/understanding; https://www.youtube.com/results?search_query=myelproliferative.

[5] http://www.ncbi.nlm.nih.gov/pubmed/

Samantha Trahan