One of the biggest challenges some people face when they have a myeloproliferative neoplasm (MPN) is finding someone to talk with, someone who really understands.
Many of us didn’t know what an MPN was when we were first diagnosed. Often we had never met anyone who had one of these disorders. One of the challenges with having an MPN is that you can feel that no one really grasps what you’re going through and it’s often hard to find someone who has been there.
Tips for talking about MPNs
Define your needs
Give some thought to what you want to achieve by talking with others. Have you just been diagnosed and feel you could use some support? Are you making a treatment decision and thinking through the pros and cons? You may need information or emotional support or you may be looking for guidance. It can help to make some notes in advance about what you wish to say.
Act as teacher
MPNs are rare and complicated, and even people who care for us deeply are baffled by the medical terms and acronyms that haematologists use to describe these illnesses. Sometimes you may feel a gap between your understanding of medical concepts and that of friends and family. Use clear, understandable terms and communicate effectively to explain what you mean. You may need to define words that have become familiar to you, like “platelet”, “phlebotomy” or “spleen”. Check our A-Z of terminology for precise meanings.
Ask for help
Let your friends or family members know specifically how you’d like them to help, whether you’re looking for advice, if you want some concrete assistance or just a sympathetic ear.
Talk effectively with your doctor or nurse
In today’s world doctors and nurses don’t always have time to talk through all the issues that can affect us as patients. But they can help you understand complex medical issues, grapple with treatment decisions, and learn how to reduce side effects and fatigue. It’s often helpful to bring a list of questions to your consultation and to bring a friend or family member with you, or even a log of symptoms or side effects. Repeat what you’ve heard to check you’ve understood. Find additional tips for talking with your doctor or nurse on this page.
Find a buddy
Sometimes the best person to talk with is not a friend or family member, but a peer support: we call a “buddy” someone like ourselves who has a myeloproliferative neoplasm and knows just what we’re going through. Please contact us if you’d like support from a buddy or if you would like to offer support as a buddy to someone else with an MPN.
Try different approaches
People have different ways of wanting to talk and different things to say – so choose the format that suits you best. Online forums can be an excellent way to learn more about MPNs and ask questions in a relaxed, friendly environment: try the MPN Voice forum at HealthUnlocked. You can also talk with a peer supporter by email, phone or post or over a coffee. Or attend an MPN Voice patient forum in the UK or Ireland.