Everyone is shocked when they are first diagnosed with myelofibrosis. Most of us had never even heard of it before. By the time the doctor explains it, many of us are feeling panic. "I have a deadly disease. I'm going to miss out on life and loved ones. How long do I have? What will happen?"
The good news is that for most people life after diagnosis will be measured in years rather than months. But this means you need to have a strategy for living with your diagnosis. What follows are brief statements of my thoughts about a successful strategy for living with myelofibrosis.
- Come to terms with your mortality: People do not like to think about death even though they know that the mortality rate is 100%. Now is the time to get answers about life and death and God and eternity. I strongly urge you to talk to a pastor who can lead you to authoritative answers from the Bible. This is no time to make up your own religion or invent your own god.
- Work through the natural grief: Denial, anger, bargaining, depression and acceptance are stages that people go through - but you may have several of these things working in you all at the same time. Recognize grief and work through it. Constant bitterness, anger or despair will destroy you much faster than any disease can. Read, meditate, get counsel and find peace.
- Do not let the uncertain future rob you of joy today: Do not fret about what bad things might happen. Instead, be determined to live in a full appreciation of the good things in the present. Make the most of each day you do have rather than wasting these days worrying about the future.
- Stay as active as you can for as long as you can: Myelofibrosis can bring all kinds of limitations into your life. But do not give up too much too soon. Continue (or start) a program of regular exercise. Watch your diet. Travel. Attend events. Keep working. Serve as a volunteer. All of these things will help you fight the battle with grief and depression. Cultivate a hobby that helps you relieve stress.
- Learn all you can: Do not be tempted by denial. If you ignore your myelofibrosis it will not go away. Instead it will sneak up on you. You need to learn all you can - good and bad - so that you can be your own advocate with doctors and other care providers. Do not be gullible and get sucked into various conspiracy theories or miracle cure claims you found through internet click-bate sites.
- Find doctors that you trust: You want a doctor (hematologist/oncologist) who is either an expert in MPNs or who is willing to admit she is not an expert in MPNs but is willing to consult with experts. If your local hematologist/oncologist is not an expert in MPNs (and very few are) then you should have at least one consult with an MPN specialist who will evaluate your status and communicate with your local doctor.
- Be determined to do worthwhile things with your MPN: You can make a positive difference in other people's lives! Get involved in patient advocacy and education. Raise community awareness. Register marrow donors. Do fund raising for research. Make having myelofibrosis worthwhile.
- "Rejoice with those who rejoice and weep with those who weep:" The MPN community is full of highs and lows. It can get you down when people are suffering and dying, but those who are left behind need you to stick with them. Do what you can to provide comfort, good advice, friendship and encouragement to the other patients and care providers out there.
- Do not always think the worst: People will say clumsy things like "You don't look sick!" They mean it as a compliment, but we often take it as a suggestion that we are faking our. Be gracious and do not let it throw you into a fit. / Your CBC numbers will fluctuate every month. Do not let it panic you. Ask appropriate questions and realize such fluctuations are not usually significant in and of themselves. / Your medical professionals are only human and they will make mistakes and oversights. Advocate for yourself, but not as an enemy of the doctor. You are on the same team.
