Where do we draw the line between advocacy efforts and complaints?

In a recent blog post on the Hemophilia Federation of America’s (HFA) website, HFA board member Joe Markowitz, 73, who has hemophilia, shared his perspective. He believes that life today is favorable for those with hemophilia, and he encouraged young families to overlook what he perceives as the grievances of a vocal minority on social media platforms.

“Most hemophiliacs get on with life, and do not obsess over the limitations that come with the condition,” he wrote. “We’re a resilient bunch and we found out early on that whining isn’t a solution. But there is a small group of hemophiliacs who seem to take joy in pointing out that hemophiliacs still have problems. Do you know anyone, with or without a chronic disease, that doesn’t have problems?”

Markowitz’s words made me uneasy, and I was taken aback by his message. When HFA shared the post on its Facebook page, the ensuing comments conveyed disapproval of the sentiments expressed. I also found myself disappointed with HFA, an organization I deeply respect, for permitting the publication of such a post.

One Facebook commenter remarked that “so many of us have had to … continue to fight just to get equal treatment and representation. It’s not whining to raise legitimate complaints, and online communities are how so many people have been able to find support that the official options have failed to provide.”

His words caused me to reflect

Rather than moving on and dismissing the post outright, it prompted a profound reflection within me. As someone who has unintentionally assumed the role of an advocate for people in the bleeding disorders community, it raised an important question: What truly sets advocacy efforts apart from mere complaining? Am I unknowingly crossing that line and risking being perceived as a complainer rather than a genuine advocate?

The underlying tone of the post also left me to ponder: How can one effectively advocate for an underserved community without being unfairly labeled as a complainer? Within the bleeding disorders community, many remain underserved, including women, those with ultrarare disorders, and people in developing countries, among others.

Admittedly, the distinction between advocacy efforts and complaining may sometimes be blurred. Still, it’s imperative to recognize that advocating for change often entails highlighting areas in need of improvement and amplifying the voices of those who are marginalized or overlooked. Many do not have a voice.

Fostering a culture of inclusivity within the bleeding disorders community is imperative. This involves acknowledging and addressing our diverse needs and experiences. By doing so, we can collectively work toward cultivating a more equitable and supportive environment for everyone who is affected by hemophilia and other bleeding disorders.

Markowitz’s perspective highlights the significant strides made in hemophilia treatment, yet it’s essential to acknowledge that many people still face considerable challenges. Let’s unite in our advocacy efforts, listening with empathy and amplifying the voices of those who require our support the most.