A guest blog post by Pattie Cornute, and video interview featuring Brenda Viola. This is a 5-minute read.
I’d never even heard of lipedema before I was diagnosed with it in 2007. I guess you could say Google is a girl’s best friend because it helped solve the mystery of lipedema for me.
But first, let’s go back in time. I’d like to share what it’s like to live as someone with lipedema before you have a word for it, before you even have an inkling of what’s really going on.
In college, I had become pretty active, and my body began to reflect that, but the weight I lost seemed to only come off my upper body. At one point I was a size 4 on the top and a size 12 on the bottom. The difference was so drastic that I felt like I had the upper half of one body stacked on top of the lower half of another body.
I liked being active. I was constantly at the gym and used the treadmill and elliptical machines regularly. With some headphones and music, I could exercise for hours and usually did. Yet over time, I never developed the body shape I saw on others who were doing the same activities I was doing at the gym; it was as if my active lifestyle didn’t match my body shape.
Seeking a Doctor’s Diagnosis
Of course, the first thing I did was talk to my family doctor about it. I asked if it could be my thyroid, my kidneys, or something else we could possibly test for. She tested everything and anything we could think of, and nothing stood out as a cause. All my tests showed I was perfectly healthy.
My doctor happened to go to the same gym as I did, so she had seen firsthand how much I was working out. She was also mystified about how I could be getting so much exercise, yet be unable to lose weight in the lower half of my body.
Another symptom that developed was swelling in my legs, especially during the heat of the summer. At the end of the day, I’d take off my trouser socks to see deep indentations in my skin, where the top of the socks would cut in, as my legs swelled throughout the day. Again, I talked to my doctor about it but still didn’t get a clear answer other than trying diuretics, which really didn’t seem to work.
The first glimmer of understanding came after I gave birth to my daughter. I had a C-section in 2004 and while I was in the hospital, a nurse pointed out a mark on my leg and asked if it was from cellulitis. I thought, “Cellulitis?”
Getting Help From Dr. Google
When I got home from the hospital, I took a fresh look at my legs. I realized they no longer looked like a larger version of normally-shaped legs. They had changed. They became more swollen, and looked like columns (no definition at my knees or calves), just straight down, with a noticeable cuff (overhanging area) at the ankle, but my feet remained unswollen.
That’s when I started Googling.
I didn’t know exactly how to describe what I was searching for, so I was just Googling, “big legs.” Immediately, I saw pictures I recognized. It was like someone put my legs on the internet!
I was excited about what I’d found online and went back to see my doctor right away. To my surprise, she completely stonewalled me. It was weird, where before she had been willing to try looking into the possible causes of the differences I saw in my legs, now she had nothing to say about it except, “Well, you’ll have to find a specialist for something like that.”
Great. There was nothing I could do except go straight back to Google and start searching again. I found something about manual lymphatic drainage (MLD) therapy, clicked a link to locate someone in my area who specialized in it, and made an appointment.
Finally, an Answer
Within the first few minutes of that appointment, the therapist told me I had primary lipedema and because it had taken so long to get properly diagnosed, I also had secondary lymphedema (when you have both it is called lipolymphedema). My first thought was, “Finally, there’s an answer! I’m not crazy!”
It was the first time a medical professional had seen my symptoms and had a name for my condition. It was a huge relief, but I also had the realization that this had been allowed to progress significantly while I struggled to get a diagnosis. I was already at stage three.
My initial excitement began to melt away as I realized the seriousness of my situation. There is currently no cure for this disease. It is permanent and it gets progressively worse. I was also frustrated to learn that it was first discovered in 1940, yet there’s still very little awareness of it in the medical community.
I channeled my frustration into focusing on my therapy. My new CLT (Certified Lymphedema Therapist) started me on a three-month regimen of complete decongestive therapy (CDT).
My first MLD session with her was confusing. I didn’t understand why they were using such a light touch. It didn’t seem to be doing anything! Plus, it’s no fun to leave a therapy session after spending an hour or more getting your legs massaged, and bandaged, to barely make it out to your car before the bandages fall down. This was my daily routine, and at times it was overwhelming, and very demoralizing.
But everything changed when I began to see results. The CLT would take careful measurements of my legs during each session, and we immediately had evidence that my legs were actually shrinking. Once there was no longer a noticeable reduction, I was fitted for graduated compression and sent on my way. Lipedema is considered a self-care diagnosis, meaning you are responsible for your own treatments.
Today, my focus remains on staying active and spreading awareness. Doctors used to tell people exercising would make their lipedema worse, but now they are telling people to join our Lipedema Fitness group, because it is best to keep moving, maintain your mobility, and lead an active life as much as possible. Because we started being active and sharing through social media how doing so is keeping us mobile, and slowing our progression, we are now changing the way lipedema is treated. That feels amazing; it’s huge! We are our own best advocates.
Thoughts and Advice About Living With Lipedema
When you have lipedema, you can feel judged. Fat bias is everywhere. A lot of times you can’t even find a chair to sit in comfortably, because if it has arms, there is a good chance you won’t fit (due to the way Lipedema changes your body shape). You begin to feel that you no longer fit into our society.
It can create so much hate-talk in our society and it breaks my heart to see people turn this hate-talk inward, speaking harshly to themselves, about their body. I’d like to encourage you to find a healthy way of talking to yourself. We can’t change what we have, and unfortunately, there’s currently no cure for it. So we need to give ourselves a break and work on finding some healthy self-acceptance.
While lipedema cannot be changed with diet and exercise, it is still critical to stay as active as possible, which can be quite challenging on an emotional level, when you don’t see typical results. But without the activity, our bodies begin to worsen rapidly.
As a way to spread awareness, I’ve become active in the lipedema health and wellness community, attending and presenting at conferences, sharing blog posts and videos on Instagram, and maintaining both a Facebook support group, and a public page for this community. It’s been so inspiring to hear other women’s stories and help support them as they go through their lipedema journeys.
It’s important to keep in mind that each person lives with this condition in their own unique way. Some people can be immobile at stage 3, while others are running marathons. There’s no “right way” to have lipedema, and each of us needs to find our own path and what works for us.
To a new person joining the lipedema community, I’d say: Don’t get overwhelmed. We’re really glad you’re here. You’re not alone. And I’d also say: Don’t let anything hold you back. Let’s stop hiding and start living. Get your beautiful lipedema body out there, and live your beautiful life!
Watch The Entire Interview
About Pattie Cornute
After her lipedema diagnosis in 2007, Pattie initially listened to the myth that exercise worsens lipedema, and gradually over the next few years she became depressed as her symptoms worsened, and she nearly lost all her mobility. In 2013, out of sheer fear and desperation, she began training again. This time with the help of her husband Bob, a Martial Artist, and CrossFit instructor, and they noticed an immediate improvement in what her body was capable of. She got stronger and regained all her mobility. As a way to spread awareness of what lipedema is, and how important staying active is, she launched a body-positivity blog and Facebook support group called Lipedema Fitness. She’s also the founder of the first Lipedema Triathlon, which takes place in June during Lipedema Awareness Month. This June will be the 5th anniversary of this annual event.