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


Last bastion

I have stated so many times that I’m sick of myself that I believe obesity is the last condition about which people feel free to be bigots. People who would never dream of mocking someone for their ethnicity, sexual orientation, religious preference, or any other of the “protected classes” don’t seem to hesitate when it comes to making or laughing at a fat joke, mocking someone’s physical condition, belittling them for their negligence in doing something about their appearance, or what have you.

Well, guess what? You may recoil from people who still use the N-word; you may be meticulous about inquiring about someone’s preferred pronouns; you may be horrified at seeing our former president mock a disabled veteran; but if you treat fat people with disrespect, you are still a bigot.

And no, there is no excuse for not being up on the literature informing us that being obese is not the simple matter of calories and exercise that everyone has always assumed, for not knowing that there are extenuating circumstances in the form of hormone imbalances, insulin resistance, thyroid issues, excess cortisol and, yes, my particular condition, lipo-lymphedema, which is a combination of lipoedema (a genetic fat-storing condition) and lymphedema (due to vascular insufficiency). It’s hard enough being a fat person with all of the inherent indignities without having blame assigned to you for your condition.

But that wasn’t my primary mission in starting to write this piece; I had a particular item of discrimination that I wanted to address: Chairs.

Once a week on the Facebook page “Lipoedema Warriors,” there is a posting called “Vent Lounge,” where you can blow off steam by complaining about whatever you like in connection with our condition. This week, one person wrote, “Summer is upon us, and I’m dreading the white plastic chairs. I cringe whenever I am invited to someone’s house for a barbecue. I’m tired of sitting slanted with half my ass cheek in the chair, so uncomfortable.”

This brought to mind all the times when I have been similarly uncomfortable or, worse, simply had to stand because there was nowhere for me to sit where I would fit. And the thing that immediately popped into my head, ahead of all the instances in which I had to ask a restaurant server or a library page to find me a chair without arms, was the doctor’s waiting room.

Considering that doctors are supposed to be all about health, you would think that they would have a thought and a care for all the people who come to see them, not just the physically fit, but my experience has been quite the contrary. The doctor I used to patronize redecorated his waiting room, putting in new paint, wallpaper, and furnishings, and I didn’t fit into the new chairs—not even one butt cheek. The last time I went to see him before getting some sanity and finding another doctor, I stood—or rather leaned up against a wall—for almost 40 minutes waiting for my appointment, and none of his front-desk people (there are three of them) even noticed that I never sat down. That office has a lab attached to it where they do X-rays and such, and finally one of the technicians walking through for the third time noticed I was still standing and asked me if they could get me a stool. Even then, none of the regular staff caught on.

I guess I should have expected a lack of care from this doctor (and a cultivated climate of indifference in his staff), since he’s the one who refused to believe me when I explained, four years ago, that although I had been eating a healthy vegetarian diet and walking about two miles a day, I had begun gaining weight at a rapid rate with no explanation. He laughed and then handed me a diet sheet. But although I left him behind and found someone more empathetic (and better informed), the doctor’s waiting room is still a sore point.

I visited another new doctor a few weeks back—a vascular specialist who would be expected to see a lot of people my size, since his focus is on lymphedema. But the waiting room contained the same array of chairs with arms that probably don’t fit anyone over a size 12, let alone those of us with fibrotic pockets of runaway fat on our extremities, exacerbated by swelling from excess fluids. I do have to give that office staff credit, though—when I set the brakes and plunked myself down on the seat of my wide walker, one of them looked around, realized that there was nowhere else for me to sit, and promised to bring out some armless chairs into the waiting room before the next time I came. I said, “Don’t do it for me, do it for all your patients who are like me but don’t have the nerve to speak up.” He looked abashed and nodded.

The chairs aren’t the only problem, although they are probably the most egregious: There are also things like hospital gowns, size average, that don’t come within a foot of meeting over my larger frame; the lack of large-size blood pressure cuffs that mean you either get a problematic reading from my wrist or you drive my pressure through the roof by painfully compressing my upper arm with your normal-size cuff; the disposable shorts provided for patients who need an on-the-spot ultrasound that wouldn’t fit over one of my thighs if I combined the two legs together; the exam tables and scanner beds that don’t support my weight…there’s a long list.

I have come up with some solutions for myself, including using the aforementioned walker with the built-in seat so I always have some recourse if no one can provide a more permanent resting place, bringing along my own large-size hospital gown in my purse, and refusing to have my blood pressure taken unless the doctor has the proper equipment. But none of these are good solutions, and they shouldn’t be necessary. Our society has begun to mandate things like the installation of ramps and elevators and push-button self-opening doors and handicapped parking spaces, but they haven’t caught on to the needs of a whole class of people—we double-wides. So in the meantime…

Doctors: Have a thought for all your patients, not just the ones who were blessed by nature with a body they find themselves able to hold to an “average” weight and shape. Think to ask your patients if they are comfortable and, if not, what you can do to help them. Put at least one loveseat in your office waiting room, or a couple of armless chairs. Buy a few gowns that fit not just we fatties but also women with double-D bosoms or pregnant stomachs. Spend the $40 it might cost you to stock an extra-large blood pressure cuff. Because let’s face it—the whole world is going around kicking and screaming about people’s right to be treated equally and with respect—but no one seems to want to acknowledge ours.

Fat people are not a joke. And at the very least, we deserve a seat in the waiting room.

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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.