Ruth Fein

Fatigue affects nearly everyone living with myelofibrosis (MF), though no two patients experience it the same way. As a patient myself, I know it can come and go, or it can be a constant presence that shapes every part of your day. What most of us share, regardless of where we fall on that spectrum, is the knowledge that MF fatigue is much more than a normal feeling of tiredness. Sometimes we have to remind family and friends of that, and even our doctors. Here’s the good news.

For people living with myeloproliferative neoplasms (MPNs) like myelofibrosis (MF), the physical symptoms can be relentless. But the invisibility of the illness and the feeling of being misunderstood create an emotional burden that is alsodifficult to bear. For many patients, a support group has become a lifeline. I know this firsthand.

When we hear about the importance of self-advocacy, it’s usually about communication with our healthcare team. But advocating for yourself is equally important with your family and friends. More than half of individuals who participated in a 2025 Patient Power survey reported that feeling misunderstood was one of the toughest challenges they face living with cancer. In fact, 53 percent put at the top of their list friends or family who say, “but you don’t look sick.” None of us wants to look sick.