By William Repicci, President & CEO of LE&RN

At a recent staff meeting, we discussed the emotional impact on those who live with lymphatic diseases (LDs). This includes lymphedema (LE), lipedema, lymphatic malformations (LM) or vascular anomalies. One thing was clear: most doctors know little about these diseases. Too often, their reaction to their ignorance is to try and convince their patient that their condition isn’t all that serious and may not be worth undo attention. Why is this? One explanation is that experts like to feel competent and moral. Call a professional’s ethics or abilities into question and they have two choices: they can admit their lack of knowledge, or they can try and convince the patient that the condition isn’t so bad, or even worse, the patient’s fault. Most people living with LDs have been routinely demeaned by the latter response. It’s a brilliant strategy that can then lead to patients being told to stop whining and to just feel grateful for the care they have received. It is time we put an end to accepting these responses from health care professionals.

As if the universe heard our staff discussion, I then picked up The New York Times and saw the featured article, “Treating Chronic Pain Takes a Team. I Had to Build My Own,” by Kari Cobham. The author doesn’t have an LD; however, her words will resonate with anyone who does.

“The thing about chronic illness, whether you’re living through pain or other debilitating symptoms, is this business of appearing normal, of portioning out limited energy on days when walking across the room without losing your breath isn’t possible. It can feel like a solo battle, but it’s not. Around 40 percent of Americans live with at least one chronic illness that causes fatigue, mood disorders or persistent pain.

"Living with chronic illnesses… is a grief journey too, cycling through both accepting and mourning the reality of my limitations. Some days I’m productive, confident, and driven. Other days, raging against those limits, against genetics; stagnant, aching, and sad.

"I have spent a decade trying to connect the dots between conditions and finding specialists that actively listen, take my joint pain seriously, anticipate and treat the symptoms. Navigating the health care system can be byzantine and difficult for anyone, from complicated coverage to access to care. You have to be proactive, prepared, and assertive just to be seen and heard. Navigating the economics, gender bias and racism in health care has forced me to actively assemble my care and hone self-advocacy, like an armor, just to stay alive. I became my own advocate.”— February 15, 2022, Kari Cobham, The New York Times

I urge you to read Ms. Cobham’s full article: https://www.nytimes.com/2021/11/09/well/live/chronic-pain-treatment.html

There are up to 10 million Americans with LE, another estimated 17 million women with lipedema and countless others with LMs and other LDs. We need to work as a community to help each person advocate for themselves. Then, we need to all advocate for one another. There is no limit to what is possible if 30 million Americans and their loved ones demand change. That journey starts with extending a hand to all those who feel abandoned. From these beginnings, a collective hope will drive change at an accelerated pace.

There are endless ways to participate in this movement. Join or start a LE&RN chapter; advocate when we have our federal or state lobby days; plan or participate in a World Lymphedema Day event; join LE&RN’s Patient Registry so researchers have the data they need to find new treatments and cures; educate your doctor, and don’t let them off the hook if you know more than they do about your disease. Find support for yourself… and then be the change you want to see by offering that support to another.

Need help getting started? Reach out to LE&RN’s Patient Services Director, Veronica Seneriz at vseneriz@lymphaticnetwork.org and Patient Registry Director, Dr. Kimberley Steele at ksteele@lymphaticnetwork.org. We will grow this movement together.

Sincerely,

William Repicci