Roberta* has been to several doctors. She is the patient that makes a doctor takes a big calming breath before walking in the room to consult with her. Roberta is relentless, opinionated, and she has articles from websites to go over with the doctor. Lots of them. These aren’t links that the doctor can look at later. Roberta has printed every one out on actual paper, and she puts them into the doctor’s hands. She will not be ignored.
Not this time. Not again.
Roberta woke up one morning and her trousers were all too small. Everything from her hips to her ankles ached, and even a gentle push on her leg was enough to make her gasp. Roberta has stopped wearing trousers. She has a closet full of dresses with loose, flowing skirts. She wears pantyhose, even in summer, because it calms the ache and it keeps her skin from chafing when her thighs rub together.
Roberta’s doctor wants to talk to her about diet and exercise. The doctor wonders if Roberta is being honest about her food intake and suggests that maybe Roberta is overeating due to stress.
And Roberta is stressed. She has been going to this doctor a few times a year for a couple of years with a similar complaint every time, and a handful of internet research. When Roberta got access to her medical records for the year, she sees that every visit, the doctor noted, “counseled about diet and exercise.”
Finally, Roberta broke through and got someone to say the diagnosis she suspected already: Roberta has lipedema.
According to the Lipedema Foundation:
Lipedema is a chronic condition that manifests as a symmetrical buildup of painful fat and swelling in
the arms and legs, sparing the hands and feet. It occurs almost exclusively in women and is poorly understood.lipedema.org
Lipedema is a disorder of the fat cells, or adipocytes, which commonly affects women. The fat cells swell to an unusual size, and the disorder may be accompanied by lymphatic swelling of the extremities as well. Lipedema most commonly affects the legs and arms bilaterally. Women who have the disorder often have heavy or thick hips and thighs which do not change with diet and/or exercise. It is estimated that about 11% of adult women worldwide have lipedema.
The diagnosis of lipedema can be tricky, as Roberta learned. Many general practitioners may not have heard of the disorder, and their well-meaning advice can have the unintended effect of making a patient feel unheard, confused, and mistrustful. This is the state Roberta was in when I met her.
Many of the suggested treatments for lipedema have to do with managing two of the major symptoms: swelling and pain. Manual Lymphatic Drainage (MLD) is recommended for the management of both these symptoms. Roberta, and others, have come to me for MLD as part of lipedema management.
I find that I am also holding space for the stories that come with lipedema. The healthcare professionals who dismissed, and the ones who listened. The hours of solitary research and the daily life in a body that would not be how it was supposed to be. The aching relief to know that other people know what they are going through. The tearful gratitude for every healthcare professional who listened without judgement, said “I don’t know” when necessary, and helped when it was possible.
About 1 in 9 women may be living with lipedema in some form. Many of them don’t know, they just understand their bodies as problematic, aching, maybe even “deformed.” I urge all of you to have patience, and
believe deep in your soul that you are the expert on your body.
Keep reaching out — there are many healthcare professionals who will validate and support you.
I hope to be one of them.
*– Like all the clients mentioned on this blog, “Roberta” is a composite of several individuals. Identifying details have been changed.