The Emotional Toll of Lipedema

Lipedema is a condition that affects many women, yet it often goes unnoticed or misunderstood. For those living with lipedema, the physical symptoms are only part of the story. The emotional toll can be just as significant. This blog post will explore the emotional challenges I faced with lipedema and how I got to today.

My Feelings

My journey with lipedema began with deep frustration and confusion. I noticed changes in my body that I couldn’t explain. Despite eating fairly healthy and staying active, I continued to gain weight in specific areas. People around me constantly suggested diets and exercise routines, and when those didn’t work, they assumed I was cheating. That was the hardest part—no one believed me. Ever.

The emotional toll was heavy. Like many women with lipedema, I faced constant judgment from people who didn’t understand the condition. I endured whispers about my weight and, at times, loud, hurtful comments from loved ones about my appearance. I became ashamed of my body, always covering up and avoiding showing skin. The shame ran deep.

My Surroundings

Support from friends and family is essential when navigating the journey with lipedema. Unfortunately, not everyone understands what lipedema is, and that lack of awareness can lead to feelings of isolation. Many women hesitate to share their experiences, fearing they won’t be taken seriously—and I’ve lived that reality. I’ve had women approach me, convinced they had lipedema simply because they carried a bit of extra weight, even though their legs looked like twigs. Others jumped straight into diagnosis mode: “Have you tried this diet?” “What about this exercise?”

I can count on one hand the number of people who’ve spoken to me about lipedema without offering a hurtful comment or unsolicited advice. Don’t get me wrong—I don’t harbor resentment toward anyone in my life. But the judgment is still there, and I know many of you don’t even realize it’s happening. That is something I struggle with daily.

Seeking Mental Help

When I first discovered I had lipedema, I had no idea how deeply it would affect my mental health. The day I came across a post about lipedema, I let out a heavy sigh—and then I cried for what felt like an hour. Honestly, I still cry sometimes, wondering, Why me?

This is where seeking professional help becomes important. A therapist can offer tools to cope with the emotional challenges of living with lipedema, especially after surgery. Therapy can help address anxiety, depression, and low self-esteem. But just like finding a doctor who understands lipedema, finding a therapist who truly gets it may take time and patience.

Right now, I’m working with a therapist to explore whether I have ADHD. There are studies suggesting a link between ADHD and lipedema, but I’m not a medical professional—so I’m letting the experts do their job and help me understand myself better. Interestingly, my Lipedema Sisters often ask, “Are you sure you don’t have ADHD?” They get it.

When I finally confided in a few friends about seeking an ADHD assessment, it took everything in me not to cry. Their response was crushing—they called me stupid, mocked my decision, and questioned why I was even bothering. What are you trying to prove? they asked. That kind of reaction stays with you.

What Else Have I Done

I made a conscious decision to stop listening to the negative thoughts. And yes—I know how hard that is, especially when those thoughts are echoed by people you love. But here’s what I do: I let them speak, I process their words, I grieve the hurt, I forgive them for their ignorance… and then I move on. That’s my power.

I also started doing things that bring me joy. For me, that meant enrolling in baking school. When I’m in class—aside from my tired legs—I forget everything else. I’m present, I’m happy, and for a brief moment, I forget I have lipedema. Fun doesn’t have to be big or flashy. It can be grabbing a bite with friends, sharing a laugh, or simply doing something that makes your soul feel light.

And then there’s movement. Swimming, weight training, walking—these aren’t just physical activities, they’re mental resets. They help me reconnect with my body in a positive way. Even something as simple as deep breathing can be transformative. It calms the nerves, grounds the mind, and reminds me that I’m capable of so much more than I sometimes believe.

Final Thoughts

Navigating life with lipedema can be incredibly challenging, but it’s important to remember—you are not alone. Many women share similar experiences, emotions, and struggles. Building a support network can make a world of difference. I’m grateful to have a few friends who, no matter what, just get it.

The emotional toll of lipedema is real and complex. Acknowledging those feelings and seeking support is a vital part of the healing process. Whether through therapy, support groups, or self-care, there are ways to cope and find strength. These tools can help shift the perspective from pain to empowerment.

The journey may be long, but peace and acceptance are possible. Embracing your body and your story can lead to a more fulfilling, authentic life.