How myelofibrosis patients and care partners can support one another

As a health and life sciences reporter and a patient advocate for people living with rare cancers, including my own myelofibrosis (MF), I share people’s insights about living with a chronic cancer.

If just one patient is empowered to know that they aren’t alone; is able to share with loved ones and friends what it’s like for them day to day, from diagnosis through decades; and can understand the need to advocate for themself, then I will have left the legacy that drives me.

The same is true for anyone who takes on the role of MF care partner.

Living through the worry, uncertainty, treatments, and disease progression can take its toll, wearing both of you down over time. One long-time care partner told me that having a measure of self-awareness has always helped her.

“What do I need to do to take care of myself?” That’s the question she advises care partners to ask themselves. And perhaps most importantly, it’s not just an exercise for creating New Year’s resolutions once a year. It’s something to ask themselves regularly.

You might think of it this way: A care partner who takes care of themself is also giving a gift to the loved one they’re trying so hard to help.

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How those of us with myelofibrosis can support our care partners

Emotional and logistical support

Throughout my book “The Big C²: Stories from the chronic side of cancer,” there are stories, insights, and inspiration equally written for patients and care partners. But one chapter is specifically for loved ones and friends, titled “Who Has Your Back?”

Here is some of what’s addressed there.

First, in a perfect world, every person with MF would have an identified care partner soon after diagnosis. Their care partner’s contact information would be shared with the care team. The care partner would have access to all health and medical records, be fully informed, and be an active, committed part of the long cancer journey.

Unfortunately, life is not always perfect, and this scenario is not possible for everyone who lives with MF.

If no care partner is available, a member of the patient’s medical care team, such as a social worker, can help find or designate one. This will be someone familiar with the healthcare system who can help them through the emotional, time-consuming, and financially stressful world of cancer treatment and survivorship.

A few notes of observation

• A person with MF should have a comprehensive care team — physical and psychological. A care partner is simply another member of that team.
• If a patient sees life as half empty rather than half full, it may become part of a partner’s role to see the truth in the other half of the glass.
• Over time, a patient’s needs may ebb and flow. A care partner can suddenly become a caregiver, and they need to be prepared for that.
• People need to be honest with themselves. “Can I do this?” Not everyone is cut out to be a care partner, no matter how much they love someone and want to help.
• A partner’s engagement with the medical team, institutions, insurers, etc. may change and increase over the course of any chronic condition, particularly if symptoms make daily tasks more challenging.
• Care partners are a patient’s additional eyes and ears. To ensure the best possible care, they may need to adjust the picture that a patient paints of themselves for their medical team. They may see and hear things that the patient doesn’t notice — or care to admit. They can remember these details and write down questions that otherwise wouldn’t be asked.
• This ongoing partnership often must survive life-altering adjustments.
• The need for assistance may change over time, including navigating administrative aspects of care (e.g., insurance, appointment scheduling, and juggling travel).
• Living day to day in a supportive care partner role can feel like a tremendous responsibility, more demanding than anyone expected. It becomes even more complicated when a person in need doesn’t want to accept help.

At times, a care partner may feel frustrated and ineffective, even guilty about not doing more or needing time away from the person they care deeply about. Communicating about this is as important as recognizing the feelings themselves.

The bottom line: The patient and care partner make the best team when they acknowledge their feelings and the emotional and physical challenges they face.

As the one living with MF, the best gift you can give your care partner goes beyond acknowledging how grateful you are for their help and presence in your life. It is understanding that they too are deeply affected throughout your MF journey. They, too, need support. They, too, need the love and care of a partner by their side.

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.