Communicating

• Everyday challenges
  • Contraceptives and HRT
  • Preventing DVTs
  • Renewing intimacy
  • Coping with side effects
  • Cost of medications
  • If you need surgery
  • Itchy skin
  • Living abroad
  • MPD ID Cards
  • Planning for travel
• Newsletters
• Videos
• Your state of mind
  • What you may be feeling
  • Invisible diseases
  • Communicating
  • Coping long-term
• If things get serious
  • After a serious clot
  • End-of-life
  • Hospice care
  • Reducing pain and symptoms
• Ways to feel better
• MPDs in pregnancy
  • After delivery
  • During pregnancy
  • Miscarriage
  • Options after miscarriage
  • Planning before pregnancy
• Staying well
  • Staying active
  • Keeping track
  • Reducing stress
  • Eating right
  • Know the signs
• Treatment decisions
• Talking with your doctor

It’s happened to all of us: We explain our MPD to family and friends and get a blank, confused look in response. Many people in our lives are unfamiliar with MPDs – but excellent communication can help.

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.

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.

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 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.

MPDs are rare diseases, so it’s not surprising if others feel confused. Good communication will give them greater insight and empathy for your experiences.

Even the acronym 'MPD' overwhelms people. I don't know where to begin.