In this blog, a woman shares her very real experience finding out she has lipedema disease.
Lipedema Disease Ruined and Saved This Fat Girl’s Life
In my 30 years of life, or at least over the last ten years, my weight and chronic pain has left me at a loss. I’ve tried every crash diet that exists — Keto, HCG, Phentermine, low-fat & high-protein, intermittent fasting, and the Beyoncé detox of spicy lemon water. I’ve trained and ran half marathons, hired personal trainers, seen a nutritionist, and eventually, when my anxiety and depression took over, started therapy. I’ve really tried not to be fat, but here I am.
My ego would like me to point out that I’m not an obese person, although my doctor would disagree. I was never an overweight kid and remained active into adulthood. I played basketball, ran track, and practiced a balanced diet. When I felt pain, I contributed it to my weight. When the pain turned debilitating after starting birth control at 19 and my weight shot up, my doctor told me to “lay off the cake.” Had he spent more than ten minutes with me, I could’ve explained that I’m not a fan of cake, and he was a dick.
Eleven years later, as I ring in my 30th birthday, I wish I could say I’ve learned to love my body and embraced the “Every Body is Beautiful” campaign. But I’ve been worn down, embarrassed, and depressed. In the two minutes between a shower and getting dressed that I avoid eye contact with myself, I evaluate the painful bruising all over my legs. I take in all my weird, bulky cellulite that, for some reason, always appears extra-fatty while also extremely firm. I avoid physical touch because even a gentle tap is painful. I teeter between sadness, helplessness, and anger.
Why do I wear a small t-shirt and an XL pant? If I lose weight, why is it always in my upper body, and I remain a size 16 jeans at any weight? My god, I cannot afford to lose another cup size. I start to furiously ask Google all of these questions. I ask her why my knees have so much fat around them, why I bruise so easily, and why I can’t run anymore without incredible pain. As I start to go down the 2 AM rabbit hole, I come across a medical journal in Germany about fat disorders and start reading about something called Lipedema. From here, my journey to healing (but also a lot more pain and anger) begins.
Lipedema is a subcutaneous adipose tissue disorder, in which the blood vessels and lymphatic system do not properly move toxins out of the body through the lymph nodes. This causes easy bruising, swelling, bulky legs (and sometimes arms), chunky looking cellulite that are actually lumpy cyst-like bulges, and cuffs around the wrists and ankles. Essentially, the body doesn’t drain liquid, and the “clogging” causes fatty masses all over the body. Specialists estimate this affects approximately 10% of women across the world, yet it goes widely undiagnosed. Or, more commonly, misdiagnosed as obesity.
After reading as much as I could about lipedema disease and the handful of doctors who study it in the US, I brought this information to my doctor. He scoffed at me, requested I stop self-diagnosing, and suggested I get lap band surgery. He would prefer I get a serious surgery to remove part of my stomach, despite all my labs coming back athlete-level healthy. Upon a second request for a referral, he suggested I increase my anti-depressant dosage, and again, stop reading fake medical journals. I left in tears, half out of anger and half out of embarrassment.
After a few days of additional research, I started making calls. I found the best doctor specializing in subcutaneous adipose tissue (SATs) disorders, flew to Arizona from Texas, and was immediately diagnosed. I was put on a strict diet, prescribed a compression machine and compression garments, and am scheduled to get out-patient surgery to drain my excess fluid by the end of the year. It is generally an inconvenience, but I’m psyched for what comes next.
I’ve just completed a DNA test for a research study related to these disorders and will participate to evaluate the affect this surgery has on the disease. While I plan to journal my own experience through the process, I’m particularly interested in spreading the word about Lipedema, given my experience with gas lighting from my many male doctors. While in AZ, each team member had story after story about women being told they were crazy, that they were lying about their diets, exaggerating their pain, and simply not working hard enough.
The thought of one person going through a serious surgery like the lap band procedure recommended to me — when it won’t actually help — terrifies me. Stay tuned for my many updates, but in the meantime, feel free to reach out to me if you think any of the following apply to you:
- Easy bruising
- Firm yet fatty tissue in your “trunk” — legs, abdomen
- Skin is painful to the touch
- Difficulty or pain running, walking, or climbing stairs
- Weight gain despite healthy diet and exercise
- No weight gain in hands or ankles, causing a “cuff” to form at the wrists or ankles
I’m happy to direct to you those who have helped me. Stand up for yourselves, girlies. Be your own advocates, and down with the patriarchy.
We are very grateful to Ms. Karwick to allowing us to share her experience.
About the Author
Content Creative. Women’s Health Advocate. Experience calling out mansplainers and finding carb substitutes.
Sep 23, 2019 · 4 min read
This article is from Medium.com and was posted on Sept 2019. https://medium.com/@karwickca/lipedema-ruined-and-saved-this-fat-girls-life-26ce65ec9185