One of the biggest challenges people face when they have an MPD is finding someone to talk with - someone who really understands.
Many of us didn’t know what an MPD 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 MPD is that you can feel that no one really grasps what you’re going through – it’s hard to find someone who has been there.
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.
MPDs 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 glossary for precise meanings.
Let your friend or family member 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.
In today’s world doctors don’t always have time to talk through all the issues that can affect us as patients. But doctors 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. You can find additional tips for talking with your doctor on our Living with MPDs pages.
Often the best person to talk with is not a friend or family member, but a peer supporter: someone like ourselves who has a myeloproliferative disorder 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 to someone else with an MPD.
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 MPDs and ask questions in a relaxed, friendly environment: try MPDChat. You can also “talk” with a peer supporter by email, phone or post or over a coffee. Or attend an MPD patients’ forum in the UK or Ireland.