My thoughts on living with lipedema and lymphedema…and other stuff


Criteria for a visit to the doctor

Today I went to a new doctor for an exam/procedure I’m not going to discuss here “out loud,” but it made me think about what is needed by people in my situation (weighed down by both fibrotic fat and lymphatic fluid), and I’m hoping that it also made the people with whom I met today think about those requirements as well.

I’m going to say, though, that this doctor’s office passed most of my list with flying colors:

• They were running on time, and staff saw me within five minutes of my arrival to get the intake process going;

• The waiting room had perhaps a dozen or more comfortable, tall chairs with no arms, plus a couple of loveseats that would accommodate my size without the embarrassment of having to ask for special treatment or the discomfort of having to wait while sitting on my hard, uncomfortable walker seat;

• The support staff was polite, kind, solicitous, and responsive to all my questions and requests;

• They did have one exam room with a table that raised and lowered in height, so that I didn’t have to climb up a small and precarious step-stool to gain access to it (which is good, because I can’t do that);

• Both the staff member who was taking my patient history and the doctor herself took in everything I had to say about my condition with attention to detail and without interrupting me or acting like I either didn’t know what I was talking about or that they already knew better and I was wasting their time discussing it;

• The doctor said to me that she knew what we were doing was challenging for me, and that although there were things she hoped to accomplish, it was up to me if I wanted to stop at any time for a break or to put an end to the treatment.

• At no time was I rushed or made to feel like they were wishing they could get on with their day.

If only doctors realized that there are a few simple things they could do in their practices that would make their patients feel so much better about coming to them, the world would be a much happier place. Details as small as armless chairs, moving tables, and (maybe the most important) staff who are attentive and helpful instead of dismissive and impatient made my visit so much more pleasant than I had anticipated.

As to what was lacking…I guess it’s hard for doctors who are, let’s face it, in a for-profit profession, to think about the nine percent of their patients who might need a lot more from them than the other 91 percent will, but…is it too much to ask for wider exam tables, or even for someone to be ingenious about inventing tools that would aid people in lifting limbs that are too heavy for them, or helping people to recline? I mean, I own a sofa that I bought for under $1K at Living Spaces that has an adjustable headrest, lower-back lumbar support at the touch of a button, and a shelf that raises to support my legs from knees to ankle; would it be such a leap to create an exam table with all those features? I’ll bet all the size-10 people out there would appreciate it almost as much…

Food for thought, medical professionals.

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About Me

I started this blog to talk about a genetic, fibrotic fat-storing (some say autoimmune) condition called Lipoedema, which is something I began to experience in my 60s, although some see early onset at puberty, or post-pregnancy, or at menopause. The other “L” condition from which I suffer is Lymphedema, as a common secondary effect of the fibrosis that blocks lymphatic drainage. Despite the fact that one in 11 women suffer from lipoedema, most doctors have never heard of it, so on top of the pain and embarrassment of this extremely obvious malady, millions of us are out there being fat-shamed for a condition that isn’t contingent on diet or exercise for its growth. This blog was intended to share my reactions.

I have, however, reserved the right to discuss “other stuff” here and, increasingly, since January 20th, 2025, that is politics, because what else, after all, are we legitimately obsessed with in this age of fascism in these United States of America? So while the “theme” of this blog may be confusing, it is my blog, where I can talk about whatever I wish. You are not constrained to read the parts you don’t like. But I feel compelled to write about them.