Try these tips to communicate with the people in your life. It’s happened to all of us: We try to explain our myeloproliferative neoplasm (MPN) to family and friends and get a blank, confused look in response. Many people in our lives are unfamiliar with MPNs but excellent communication can help and in close relationships it’s essential to avoid unspoken fears and anxieties about your MPN.
Techniques for improved communication
Stay calm
You communicate best when you speak with a calm, even voice. Try to avoid sounding defensive if at all possible. Remember your body language will also convey a lot about your feelings, look at the person with whom you are communicating and smile if you can as a frown will make others feel defensive and less interested.
Explain concepts
Be prepared to explain concepts that have become familiar to you. Your listener may not know what a platelet is or how blood cells are made in our bodies. Use simple language and avoid medical jargon.
Offer a comparison
Compare your symptoms to things your listener can readily understand: the fatigue that comes with the flu, headaches from migraines or itchy skin from chicken pox.
Talk about your ups and downs
Others usually see you when you’re feeling your best, when you go out or go to work, not when you need to stay home to rest. Let others know that your symptoms can vary significantly from day to day.
Set limits
Clarify that you may need to take time for hospital appointments, to rest and to deal with symptoms. Let your friends and family know that you value their understanding and support.
Build in flexibility
Talk with friends and family about your need to stay flexible. Alert them that you may need to cancel plans at the last minute if you’re feeling unwell.
Let them ask questions
Some people in your life may want to understand more. Let them know that it’s okay to ask questions and maybe get them to have a look at this website or some of the publications that are produced by MPN Voice.
Try forums
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 MPN Voice’s online forum at HealthUnlocked. You can also ‘talk’ with a peer supporter by email, phone or post. Or attend an MPN patient forum in the UK or Ireland.
MPNs are rare diseases, so it’s not surprising if family and friends or work colleagues feel confused. Good communication will give them greater insight and empathy for your experiences.