Hi. Welcome to Bloom Anywhere. I'm Gwen Moran, a writer, editor, author, and problem-solver. My goal is to share information, ideas, and resources to help you overcome obstacles, reach your goals, and find more joy in life, even when things are messy. Thanks for joining me. (If you got this from a friend, subscribe here.) I'd love your feedback and suggestions for future topics. Please send me an email: connect@bloomanywhere.com.
This one is personal.
More than a year before she died, my mother was sitting in her chair in my childhood home when I stopped by for a visit. After two knee replacement surgeries, she had developed a painful accumulation of fat tissue just above her knees that was affecting her ability to move. She was distressed about it and asked me what I thought was happening. I suggested that perhaps it was just a bit of weight gain after the surgeries and that we could walk together a few times each week. I told her not to worry. It wasn’t that bad.
I truly regret those words.
What I didn’t know at the time was that my mother had lipedema, a painful, progressive fat tissue disorder. She was part of the estimated one in 10 women who have this disorder, including me. It affects women almost exclusively and is exacerbated by hormonal events like puberty, pregnancy, and using birth control pills, as well as traumas like surgery. Lipedema tissue typically doesn't reduce with diet and exercise like regular fat, although women with lipedema may have regular fat, too. The condition is painful and progressive. For many, the only “cure” is surgical removal of the tissue, often not covered by insurance. (Although it was discovered in the 1940s, the first standard of care for lipedema was published in 2021. It still does not have an ICD-10 code. Most doctors don't know how to recognize or diagnose it, or even what it is.)
Living with Chronic Anything
June is Lipedema Awareness Month—a time to raise awareness among healthcare practitioners and the general public about the disorder. I make a point of educating every healthcare practitioner I come into contact with. Some are receptive. Some give me an eye roll. Some are dismissive. Despite all the doctors I’ve seen in my life, it was a physical therapist who first told me about lipedema in 2021. By that time, I was Stage 4, and it was affecting my mobility. Women with lipedema often have hypermobile joints, which can contribute to arthritis or other joint issues.
Since then, I’ve learned how to ease the pain and control progression through a variety of activities, such as wearing compression garments, swimming regularly, and adapting my diet to eliminate inflammatory foods, which can vary from person to person. I live with a pain level of about 3 on the Numeric Rating Scale most days. Some days, it’s better. Some days, it’s worse.
Shut Up or Talk About It?
People who live with chronic pain or illness often feel at risk if they disclose it. Even as I write this, I worry that prospective or current clients will read and take pause. We may be seen as less capable than others. How will such an issue or pain affect our ability to perform jobs or other roles? What if it puts us out of the running for a role or gig before we even have a chance to prove ourselves? It’s a real concern for us, even if it’s not actual reality. There has never been a time when lipedema or chronic pain has been a barrier to my work.
So, why be so public about such a deeply personal issue? There are a few reasons. When I had breast cancer in 2011, I wrote about it on social media and in essays because I didn’t know what else to do. I was the mom of a 9-year-old. I needed someplace to channel my fear and anxiety. When I stopped counting, more than 100 women and one at-risk man told me that my breast cancer story had inspired them to get first-time or overdue mammograms. If using my words could make such an impact, what was a little discomfort about sharing them? Stories make a difference.
In addition, I’ve written about having lipedema on my social media channels and once before in this newsletter. Because of that, I have heard from about a dozen women who recognized that they or someone they love has it, too, and were subsequently diagnosed. Such diagnoses put to rest a lifetime of being told to just stop eating sweets and get more exercise. Women with anorexia nervosa can have lipedema tissue. My story has inspired other writers to write about it, extending the ripple effect.
When we discuss hard things, we give people information and resources. They feel less alone and may find the encouragement they need to get help. I’m in social media groups filled with tens of thousands of women who have lipedema. Routinely, posts are filled with despair, self-loathing, and worse from women who are struggling with this condition. Awareness can also help people be more accepting of themselves—or of what they don’t understand. That's what Bloom Anywhere is all about.
I’ve been a successful writer, editor, and editorial consultant for decades. I’m able to travel, but a daily commute would be a challenge. Fortunately, I work in a field where remote work is common, even as it falls out of favor in other sectors. Many with chronic illnesses, conditions, or pain are not as fortunate. In my work as a writer, one of the stories that stayed with me was about a woman who had a spine injury that resulted in chronic pain that disrupted her sleep. She was on thin ice at work because of chronic exhaustion. But when the pandemic happened and, suddenly, she could work at home and make a short nap part of her daily routine, she thrived in her job. Such a simple accommodation benefited both her and the company. Perhaps, as we learn more about how people work best, we can do better for everyone.
Learn More About It
I invite you to learn more about lipedema and other chronic illnesses and conditions. As we all do, I hope we can reach a greater level of acceptance for people who may face challenges with their health or other issues, yet still bring 100% of their talent and dedication to everything they do.
As always, I invite you to reach out if you’d like to continue the dialogue: connect@bloomanywhere.com.
