Going to a support group for BC LE

Hmmm, a bit of Lymphedema folk history. Ten years or so ago the leg folks (who are primarily, uh, well, Primary lymphers--meaning their LE is a result of inborn lymphatic abnormalities) weren't even speaking to the BC LE folks. Most of us have experienced the frustration of doctors who don't recognize our reality, but the primary lymphers routinely go YEARS undiagnosed, with doctors regularly shaming them about their "weight gain." Added to that is the humiliation that many people develop Primary LE in their early teens, when their self-image is at its most vulnerable. Or they have LE from birth and endure teasing and bullying throughout their growing-up years. Still others develop it as adults, when it seems to hit them right out of the blue, and no matter how many doctors they see, it's usual for them to wait decades (literally) for a diagnosis. By then their legs are huge, hard, and leaking caustic lymph fluid, and the road to wound healing and LE control is long and arduous.

So along comes all that fluffy, pink BC awareness, and eventually we bc veterans, who are accustomed to speaking out about our needs, start to make a dent in the total apathy of the medical community toward LE. In the U.S. there's even the Women's Health and Cancer Rights Act (or whatever the heck it's called) that actually mentions that insurance has to pay for at least some aspects of our LE care. And hard as it still is for us to get the LE care we need, the point is: nobody's insurance has to cover PRIMARY LE--only cancer-related LE. 

So the resentment grows.

But even that is not all. The past decade has seen a movement toward LE research that many scientists are calling a "Renaissance in Lymph Science." Good for everybody, right? Nope! Because, where are researchers going to go to find research subjects for their studies, but to the well-organized and out-spoken hoards of women at risk for BC-related LE. When the NLN holds its biannual international conference for LE researchers and medical professionals, where researchers present their work and their findings over several days of sessions, they're hard-pressed to find any research done on Primary LE. It's all about arms. And more recently, about breast and chest LE. Much of which has no application to Primary LE, and certainly not to finding the causes of Primary LE and seeking a fix for it.

Besides all that, the lymphers with LE in their legs, genitals or abdomen as a result of gynecologic cancers, prostate cancer or melanoma (not to mention those with leg LE related to knee replacement surgery or obesity) have been similarly shoved under the carpet. When I've set up an LE info booth at ovarian cancer events, for instance, the women there have never even heard the word "lymphedema"--even those with a mysteriously fat leg that "defies diagnosis."

Like I say, ten years ago the LE discussion boards (almost entirely instigated by Pat O'Connor of LymphedemaPeople, who was himself a Primary lympher) were a nightmare to moderate, because of the gulf of resentment between the arm and leg lymphers. Even my local face-to-face LE support group, which was open to all manner of lymphers, had to be disbanded over this issue as well. 

Believe it or not, things have improved enormously, mostly thanks to Pat and others of his ilk who worked tirelessly to bring the factions together to fight for recognition and proper care for all lymphers. Primary lymphers, with years of humiliation and frustration in their backgrounds, also had to be encouraged to have a voice in their own advocacy, because many had given up and were hiding out in their homes, unwilling to be seen much less to speak out. They've certainly risen to the occasion over the last several years, and they continue to rise. 

But the point of all this background is just to say, we're all in this together, and if our Primary bros and sistahs are a bit testy, maybe it'll help a bit to understand what they've been through. Because it's only together that we can make a difference.

Okay, climbing down off my soapbox. Whew! Haven't had a ramble like that in a long time!
Binney

cookie, I've watched Jane wear her sleeves as the epitome of style, and as two very smart and savy women, I'm so glad you met and could support each other for the support group.

I've never done in person support groups. I've read some fraught writing on the subject. I need to feel really "safe" before I'll speak up in public.

Yeah, breast cancer related LE gets all the attention. It's funding, awareness and coverage based.

Kira