One of the biggest challenges some people face when they have a myeloproliferative neoplasm (MPN) is finding someone to talk with who understands.
Many 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.
Know your needs
Before you start talking about your MPN, knowing what you want from the conversation is essential. Do you need emotional support, practical advice, or someone to listen? Do you like sharing your feelings, symptoms, or treatment options? Do you want to educate others about your condition, or do you prefer to keep it private?
Knowing your needs can help you choose who to talk to, when to talk, and how much to share. It can also help you avoid misunderstandings and frustration. For example, if you need emotional support, you should speak with a close friend or a family member who can empathize. If you need practical advice, you should talk to a doctor or a nurse who can give you reliable information. If you need someone to listen, you should join a support group or an online forum to connect with others with MPNs.
Spread your knowledge
One of the challenges of having an MPN is that many people need to learn what it is and how it affects them. This can make it hard for them to understand what you're going through and how they can help. That's why acting as a teacher and educating others about your condition is essential.
You don't have to be an expert on MPNs, but you should be able to explain the basics:
What it is.
How it was diagnosed.
What treatment options are available.
How it affects your daily life.
You can also share some facts and statistics about MPNs, such as:
MPNs are a group of rare blood cancers that cause the bone marrow to produce too many blood cells.
There are different types of MPNs, such as polycythemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis (PMF).
MPNs can cause various symptoms and complications, such as fatigue, headache, fever, anemia, bruising or bleeding easily, blood clots, or enlarged spleen.
MPNs are usually diagnosed by blood tests and bone marrow biopsy.
MPNs are treated with different therapies, such as phlebotomy (removing blood), medication (hydroxyurea or ruxolitinib), or stem cell transplant.
Acting as a teacher can help others learn more about your condition and show them you are knowledgeable and confident. It can also help them ask better questions and offer more appropriate support.
Be kind to yourself
Having an MPN can be challenging and stressful. You don't have to face it alone. Asking for help is not a sign of weakness but strength. It shows that you are aware of your needs and willing to accept support from others.
There are many ways that others can help you cope with your MPN Group. For example:
They can provide emotional support by listening to your concerns, validating your feelings, or offering encouragement.
They can provide practical support by helping you with daily tasks, such as cooking, cleaning, shopping, or driving.
They can provide medical support by accompanying you to appointments, reminding you of medications, or researching treatment options.
They can provide social support by inviting you to activities, keeping in touch with you, or introducing you to others with MPNs.
Ask for help
Asking for help can make your life easier and more enjoyable. It can also make others feel more involved and appreciated.
If you have a myeloproliferative neoplasm (MPN), you may want to connect with others who understand your condition. Global MPN Scientific Foundation offers various ways to communicate with people who have MPNs, such as essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF).
You can join our online forum at Work Groups, where you can share your experiences and ask questions in a friendly and supportive environment. You can also talk to a peer supporter by email, phone, or post, or meet us in person over a coffee. And, share your story to the MPN Community.
Remember: You are not alone in this journey. You have the power to take charge of your health and well-being.