Lipedema is a loose connective tissue (fat) disorder that occurs almost exclusively in women (about 11 percent of them) and is triggered by hormonal changes. It is a chronic medical condition characterized by a systemic buildup of pockets of adipose tissue (fat) in the legs and arms. It may be accompanied by an unusual texture within the fat that can feel like rice, peas, or walnuts beneath the surface of the skin. The intensity of pain may range from none to severe, and its frequency may be constant, or come and go. Common symptoms include fatigue, muscle pain, and easy bruising. It is not obesity and is largely unaffected by diet. Exercise can mediate the effects, but not the cause.

A side effect to lipedema, due to blockage in the body from the growing fat pockets, is lymphedema, a condition in which lymph fluid, unable to move out of the system, builds up in tissues (mostly in the legs and feet, due to gravity) and causes swelling, which can actually be more painful and impactful than the lipedema itself. People with lymphedema can carry up to 50 pounds per leg in excess fluids.The combination of the two is known as lipo-lymphedema.

A friend of mine was receiving cancer treatment a few months ago, and one of the things she said hit me deep in my solar plexus:

⁣“I think about getting well, getting a negative scan and then *being* well, and yay. But then I remember that even when I’m declared well, it’s not a “hey, you’re done” thing. It’s a lifelong vigil, watching for recurrence. It’s going to be my job.”

As a person who now has a chronic condition from which there is no permanent “recovery,” this triggered a complicated response. It made me think about the complexities of guilt and remorse, anger and defiance, and the sheer magical thinking that goes into dealing with an ongoing, progressive diagnosis. Although there is certainly no comparison between the sharp and present danger of cancer with a condition that, while challenging, is not considered potentially life-threatening, I couldn’t help but dwell on the emotions her words brought up for me.

I have never been a person for what is now termed “self-care.” I didn’t mess about with makeup as a girl or young woman; I wasn’t into fancy hairdos, never remembered to pluck my eyebrows, and completely disregarded such things as manicures and pedicures. As an older woman I never established a cleansing or moisturizing routine—a quick rinse with warm water would do me, and if I was feeling particularly dried out I’d slap on some Oil of Olay, but it wasn’t the slavish nightly ritual women like my mother pursued—I simply couldn’t be bothered. The idea that someone would spend 20 minutes or more “getting ready” for bed with cold cream and head wraps and such meant nothing more to me than a delay in my before-sleep reading schedule.

Before now, I always chalked it up to having better things to do; I was intent on life and the interests that filled it, and was always focused outward on the job, the project, the painting or writing, the book I was reading, the music to which I was listening, and never on myself as an object to be studied or cherished. Perhaps it has something to do with the religion in which I was raised, which taught me always to put myself last; but what I am discovering now is that I’m just not good at self-regard, nor am I a person who is easily or willingly or even consciously able to incorporate routine into my life. ADD has been mentioned more than once in my presence in the past few years, and owning it actually provides me with some relief from guilt.

Now that I have a need for the nightly lotion (but on my legs, not my face), the rituals like regularly ingested supplements, consistently worn compression stockings, vibration, massage, exercise, mindfulness, I find that my lifelong disregard or even disdain for them was actually a mask for an inability to anchor them in my mind or perceive their necessity or obey their rules. As such, I am the worst possible person to be diagnosed with a condition that requires alertness, self-reflection, and a regimen, program, method, order that promotes a more mobile, less painful life.

I still want to be focused on the next thing—the book, the TV show, the painting, the project. In my mind I am still capable of filling all the holes in my walls with joint compound, masking the trim with frog tape, and repainting my living room; in reality, it’s all I can do, with cane in one hand and a single trash bag in the other, to get down the step from the front door to the porch in order to take out that week’s garbage. I still have thoughts of driving from Los Angeles to Port Angeles to see if it’s somewhere I’d like to retire, while the actual situation is that I can’t do 45 minutes in traffic without paying for it with spasming leg muscles and plantar fasciitis in my right heel on the gas. In the spring I think about the yard I want, in which I have dug up and replaced the grass with five kinds of ground cover and a host of bird-, butterfly-, and bee-friendly annuals and perennials, while I haltingly shuffle along the three-foot border by the fence to toss zinnia seeds onto the surface.

My mind, in short, has not yet given in to the demands of the body, and I’m not sure it ever will, which is a bad result for my physical well-being. I need those routines, that program, a plan to be better; and the irony is that if I were to simply yield to their exclusive pursuit for a while, my body might respond and give me an extension of my current abilities. But my mind keeps fighting with that “might” and disagreeing that the reward is worth the effort, and as long as it does that, I’m stuck in this limbo of reality up against unmeeting wishes.

Along with my friend, I have not quite come to terms with the idea that from now on, this is going to be my job.