Talking about MF’s effects can be a gift to friends and loved ones

Living with a rare disease brings unique challenges. Myelofibrosis (MF) is no exception.

What puts MF in a category unfamiliar to many — newly diagnosed patients, family, and friends alike — is the second “C” in its “Big C” label. MF is a chronic cancer.

What this means is that a person with MF may be in treatment for active blood cancer for as long as they live. The emotional burden of this is something we don’t always deal with.

While there are increasingly more and better drug therapies available to ease MF symptoms, a stem cell transplant is the only potential cure. Many people are not eligible for transplant or choose other avenues of care since the transplant process is accompanied by significant risks and an extremely challenging several months, both pre- and post-procedure. It is considered a “potential” cure because a transplant sometimes fails. Even when deemed successful, it can be accompanied by lifelong side effects that require continued drug therapy.

Recommended Reading

June 29, 2026 by Ruth Fein

How to manage expectations about advances in myelofibrosis treatment

I’ve lived with myelofibrosis for the past eight years, as it progressed from essential thrombocythemia and polycythemia vera over three decades. I report on its medical advancements, and I speak with numerous patients and care partners in my role as a global patient advocate.

Collectively, these experiences have led to a certain level of lived wisdom. And one critically important takeaway is that every person affected by MF has different experiences.

Each individual may live with a different mix of symptoms; they may deal with (or not deal with) the emotional side of the disease in a multitude of ways.

Some may keep their symptoms and the condition itself close to their heart, not often sharing how they feel or what their day-to-day life looks like. Others may shout about their MF from the proverbial rooftop, in person or virtually across social media.

How public we are with our myelofibrosis is a very personal choice. There is no right or wrong way to live with any cancer. However, there are some important considerations in deciding how private or visible we choose to be.

What to consider when deciding how much to share

First, remember that our family and friends cannot read our minds. They can’t be expected to understand what is invisible to them.

If you are like me, you may want to live as “normal” a life as possible, to avoid the label of “sickly” or “needy.” But over time, I learned that sharing how I feel can serve me well. It can help relieve the stress of people in our lives not appreciating our physical challenges and limitations. And it can be emotionally supportive to have others to confide in.

Among the most difficult things about living with myelofibrosis is its uncertainty.

Some people can live virtually asymptomatic for years. Then, changes may happen quickly, requiring them to alter their lifestyles, to choose different drug therapies that might work better to keep their MF from progressing, or to consider the possibility of a stem cell transplant.

In other cases, people are diagnosed with MF after experiencing life-changing symptoms. One drug therapy might work well for quite some time, or experimentation with different treatments might be needed if the person is not responding or cannot physically tolerate a particular therapy.

What does this have to do with how private we are about our condition?

Consider this: While we are living with the stress of uncertainty about disease progression — about our future — we are also aware that things can change either quickly or over time. We know that how we feel today, our ability to work and participate in activities we enjoy, may not be possible in the future.

Our friends and loved ones can benefit from these same expectations.

Becoming aware that this blood cancer is a chronic, often changing disease can allow them to be more understanding about the stress of uncertainty we may be living with. It can offer them the opportunity to be more supportive and to step in to help if and when we might need it.

Perhaps most importantly, it can allow those who care about you to let their love shine through.

What you may not think about is this: Sharing what you’re going through — your feelings, fears, and frustrations — can be a gift to your friends and family. While you might envision it as a burden, they are likely to feel grateful for the opportunity to support you.

Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.