With lipedema and many chronic illnesses, you slowly become acquainted with chronic pain. It’s not like you wake up one day, and you aren’t able to do all the things you once could. These small changes creep into your daily life…aches and pains you didn’t have before, struggling to do things that were once easy, physical changes that gradually hinder your endurance and mobility.
For me, there were a handful of moments where I realized something was wrong, but I couldn’t pinpoint exactly what was happening. 7 years ago, I had a 3-month span where I happened to slip and fall down pretty regularly. If you know me, you know I have a love affair with heels. So, I chalked up the first tumble to my new shoes with a higher platform heel than usual. Then it was water on the break room floor that I didn’t see. Then I wasn’t paying attention and stepped off the curb too early. Then I tripped on an uneven sidewalk. Every time, there was a valid excuse, but deep down I knew something was going on.
My shoes started to wear unevenly. The way I walked shifted slightly. Nothing major, but enough for me to notice. I also noticed these strange lumps forming in my legs, especially around my knees and hips. They felt like small rocks under the skin, and they were painful when I pushed on them. I was worried they were a sign of something worse going on, but I allowed people to talk me out of taking this more seriously.
I’m a worrier by nature. Health stuff gets me especially amped up. So, these weird lumps appearing out of nowhere along with an unexplained series of slips and falls naturally worried me. I went to the doctor and was immediately told it was because of my weight. Lose weight and everything would be fine. Sounds familiar.
I had one particularly large lump that was diagnosed as a lipoma. Don’t worry about it unless it starts to get bigger or it starts to hurt. Deep down, I couldn’t shake the feeling that something else going on, but I let it go. I didn’t want to be the overthinker who blew every little ache and pain completely out of proportion.
3 years go by, and I’m walking out to my car after a long day at work. I was wearing my usual boots with a moderate heel. Nothing over the top, but a stacked heel nonetheless. By the time I got to the car, I could barely take another step. My legs were so heavy. The boots were so tight. My back was hurting so much, and I couldn’t completely straighten up. I was carrying my usual work bag, but I might as well have been lugging around a bag filled with bricks.
By the time I made it to the car, I was near tears and so relieved to sit and take off my boots. I remember being shocked at how swollen my feet and ankles were. I’d never seen them like that before, at least not in the winter. For the rest of the winter, I wore a pair of flat boots and flat shoes to the office. As a lover of high heels, I would always joke with my friends and colleagues about my penchant for imprudent footwear. Even at my fluffiest, I was always perched atop a pair of platform heels or sandals. I’d tell them if you ever see me in flats, know that I’m not well and it’s a cry for help. How oddly prophetic of me. From that day on, unless I had meetings with a client, I was in some kind of flat or sensible shoe.
I wrote it off as a side effect of my recent weight gain. After years of being low carb, I took a break and was partaking in all the carbs. I thought this was my punishment for falling off the low-carb wagon and gaining weight. I “deserved” these new aches and pains because I wasn’t counting calories and carbs. Saying this out loud makes me realize how cruel and judgmental it sounds. If a family member or friend was experiencing pain like this, my first instinct would be to help figure out what’s happening. What changed? Have you done anything different? Over exerted yourself? Too much time hunched over a laptop? Not enough movement to keep muscles loose? What are you doing to reduce stress? I didn’t ask myself any of those questions. I immediately jumped into you did this to yourself. This is what you get for not obsessively weighing and measuring every last thing you ate. I truly am my biggest bully. Wow.
A year later, I was headed back from an on-site client visit. It was a short trip. I had my work bag and a rolling carry-on. It was winter and fairly cold outside. Yet, as I was navigating my way through a busy airport, I was in SO much pain because of my swollen feet. With each step, I felt my shoes getting tighter and tighter. Even though my bags were not heavy, I felt like I was dragging hundreds of pounds across the airport terminal. I was so hot and sweaty because I was in so much pain and exerting an inordinate amount of effort to *push* around two fairly small and light bags. By the time I got to my seat, my arms were burning. My legs were heavy. My feet were so swollen, I had to slip off my shoes to get relief. I remember feeling so overwhelmed by a seemingly simple physical task. I’ve never been a light packer, and I’ve carried many overly stuffed bags across the globe…up and down stairs at train stations, from one duty free shop to another, across uneven cobblestone roads and in and out of hotels with no elevators…all without batting an eye. So to be this fatigued by something so innocuous was troubling.
Again I dismissed it as my fault for having not lost the weight I’d gained a few years earlier. Had I been more gentle and less judgmental, I would have recognized a pattern over the years. These seemingly random episodes weren’t random. They were tied to periods of extreme diet restriction and inevitable binges. After each episode, I’d notice my legs felt different, my knees looked different, my arms hurt in ways they didn’t before, my stomach bulged out disproportionately on one side. I can’t say for certain, but in retrospect, I suspect each of those episodes was related to a new lipedema “explosion” in my body.
Hindsight is 20/20. It’s easy to look back on these events now and see what was happening. I didn’t wake up one day and struggle to walk or lift my arms. It happened over time, and with each incident, I normalized the pain and changes in my body. I rationalized it away…it was the shoes or weight gain or getting older or not working out enough. Then in 2020 it got to the point where I couldn’t ignore the pain and the significant growth of my arms/legs/stomach despite not gaining weight and the marked loss of mobility. It was alarming.
Almost 3 years later, I’m in tune with my body in a way I’ve never been before. I’m still my biggest bully (I’m working on it!), but I do my best to pay attention to the smallest of changes. Not everything requires action, but I take note of what’s changing and how. Some of it is a normal part of the healing process. Some of it is a normal part of the aging process. Some of it is the natural progression of my chronic illnesses. Most importantly, I don’t dismiss what my gut is telling me. It’s hard not regret ignoring my instinct years ago, but it’s much easier to focus on being thankful I listen to it now.
The LipeDiva 