Other F-words we encounter in life with myelofibrosis, Part 1

First in a series.

I’ve been thinking about “the other F-words” we deal with in life, whether we’re living with a rare blood cancer like myelofibrosis or any chronic condition. And truthfully, the same words often challenge us in our careers, family life, and day-to-day interactions with others.

In this first installment of a two-part series, here’s my rundown of some other F-words and how we might turn our challenges into another two: feeling fabulous!

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Facts

It isn’t enough to continually scroll through your social media feeds or check your email. For something to earn its place as a reputable fact, it needs to come from a reliable source and be based on scientific evidence.

With new and better treatments on the horizon and more in the drug pipeline, fact-based hope is something I encourage others to embrace.

Personally, I live with the notion that even if my amazing myelofibrosis medications become less effective, there will be another one to try, or a new combination of therapies that work better together. It is a very different scenario from just a few years ago, when few treatments were available, and the prognosis was grim.

When we are able to put emotions aside and focus on the facts — about our health conditions, our work environment, or our experiences with family and friends — I believe it can help us see more clearly what’s truly hopeful for our future.

Fear

I see fear as an often underestimated emotion. We are encouraged to be strong, to keep pushing forward through our personalized obstacle course, and to live with a positive attitude about our health and our tomorrows.

This does not mean we can’t simultaneously acknowledge our fears. A diagnosis of myelofibrosis (and most other chronic conditions) can be accompanied by the type of fear that causes us to pull that proverbial emergency hand brake, to shut down, to stop sharing ourselves with the ones we love. The fear can be palpable and long-lasting.

There is fear of the unknown, of the disease itself, and of how well treatments might work.

There is fear about life-altering symptoms that may develop, and how well we will deal with them. There is fear that our illness and its challenges will affect our livelihood and our families.

Uncertainty can breed anxiety and increasing fear. Whether it’s about your health, your job, your relationships, or the world we’re living in, overcoming fear starts with acknowledging it.

Nelson Mandela, the late South African anti-apartheid activist and the country’s first Black head of state, is often credited as saying: “The brave man is not he who does not feel afraid, but he who conquers that fear.”

Stay tuned for part two, where I’ll discuss two more F-words: fatigue and frustration.

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.