How those of us with myelofibrosis can support our care partners

So many of us are fortunate to have family and friends who help and support us in our daily lives with myelofibrosis (MF). Sometimes it’s helping with errands. Sometimes it’s accompanying us to the doctor. I like to use the term “care partner” rather than caregiver.

What’s the difference? You may live with significant, life-altering symptoms and need regular assistance. Or you may have few or no symptoms, especially if your medications are completely effective.

But living with MF — whether it’s your name on the patient chart or you’re a friend or loved one — can be like a wild carnival ride. At times you’re moving along quickly and smoothly. Then, when you least expect it, it feels like you go off the rails around a sharp curve, or something frightening pops its head out right in front of you. You’re suddenly so scared that it takes a minute to catch your breath. It’s a challenge to hold back the scream.

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In MF terms, I call this a crisis. It could be a blood clot. A cardiovascular scare. A sudden drop in your blood counts that leaves you extremely fatigued and may lead to more aggressive treatment — maybe blood transfusions or a change in medications.

This is when your care partner is invaluable. They may have to step in and provide more help and support more often.

An exhausting job

I’ve had my share of crisis episodes. After a major post-surgical hemorrhage, I slept in a recliner in the living room for three months. I couldn’t do much myself, including getting out of that chair on my own. It was my care partner — my husband at the time — who picked up the slack: cooking, shopping, driving to the pharmacy for my meds, and more.

I appreciated him every minute of every day. He said I was an “easy patient” who never complained, and he never minded. But here’s the thing: It was exhausting. For us both.

I remember feeling incredibly grateful and sad at the same time. I didn’t want him to have to take care of me. I didn’t want him to run himself ragged doing everything for himself and me and the house — all while still trying to fit in some work hours.

But here’s what I know. Our care partners who are family or friends are there for us because they want to be. It isn’t a job they applied for. It isn’t something they would choose. They would prefer that we were healthy.

Wanting to be there for us, however, doesn’t make the job easier. It can be emotionally and physically challenging. And no matter how grateful we are, and how many times we tell them of our appreciation, it can still take its toll, in the short term and over time.

Caring for our care partners

So, how can we make the job even a little easier for the people we care about, who care for and about us?

Here’s my short list.

• Start by acknowledging how much you appreciate all that they do for you. Even if you already do this, you can probably do it more.
• Show your gratitude in different ways. Have a friend or other family member visit or take you out for coffee or lunch or to pick up your meds. Line up someone else to help on a regular basis to give your primary care partner a hard-earned break.
• Surprise them with a treat — one of their favorite meals, desserts, or something else that will bring a smile to their face.
• Insist (notice I didn’t just say encourage) that they do something for themselves daily. It can be as simple as a few minutes alone. Carve out time for them to take a walk, work out, attend a class, or do another activity they enjoy. If you need to, find someone to keep you company so they can’t say they don’t want to leave you alone.
• Include them when you ask your care team about counseling or support groups. Speaking to a specialist and to other care partners can be a powerful gift.

I’d love for others to benefit from your ideas. What’s one thing you do to show your care partner your gratitude?

Together, we can work to support all of the people who support us. MF is rare, and so are the people in our lives: a very special, rare breed called care partners.

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.