Published on November 5, 2023, 12:57 am
I have faced weight struggles throughout my entire life. There have been times when I weighed over 300 pounds, and although I managed to lose 170 pounds at one point, I eventually gained most of it back. However, when I started gaining weight in the spring of 2020, something felt different this time.
The weight gain seemed to be concentrated in my legs. It felt as though I was lugging around heavy bags of bricks wherever I went. Not only did I lack energy, but I also experienced a great deal of pain. It was clear that something was seriously wrong. Simple activities like walking around the block became a challenge, which made it difficult for me to perform my job as a personal trainer.
When I sought medical advice, the doctor attributed my pain to my obesity. Needless to say, I was furious. Having worked as a trainer for years and having fluctuated in weight numerous times, I knew that there was something more going on with my body than just being overweight. My lived experiences were telling me that.
Thankfully, through years of advocating for myself and learning how to communicate effectively with doctors, I finally received a diagnosis: lipedema. Lipedema is a condition where painful fatty deposits grow beneath the skin. Finally having a name for what was happening to my body brought me immense relief. It was something concrete that could help guide me in finding treatment options.
I began researching lipedema and exploring non-invasive treatments such as physical therapy. Wearing compression stockings was another method recommended to improve circulation and aid the lymphatic system in draining fluids from our tissues. In addition to these measures, I continued exercising as much as possible.
Through conversations with other individuals living with lipedema, it became evident that surgery might be necessary for me too. The surgical techniques used for lipedema are similar to those performed in certain cosmetic procedures like liposuction and tummy tuck. However, in the case of lipedema, the focus is on restoring mobility and reducing pain rather than solely achieving a specific appearance.
Finding a surgeon who was well-versed in treating my chronic medical condition was quite challenging. Some surgeons were hesitant to operate due to my body size and the severity of my lipedema. Fortunately, I received a recommendation for Dr. Jaime Schwartz, an expert who helped develop the US standards of care for lipedema.
The only issue was that Dr. Schwartz practiced in California while I resided in New Jersey. Although my insurance covered the medically necessary surgeries, I ended up spending over $50,000 out-of-pocket to travel to the West Coast for this specialized medical care. My husband and I dipped into our retirement savings to afford these surgeries, which were essential for me to regain control of my life.
To date, I have undergone three surgeries. The first addressed the excess skin hanging from my belly known as the pannus or apron belly. It weighed around 15 pounds and was causing skin infections, affecting my posture, and causing significant discomfort. The other two surgeries focused on removing painful fatty nodules from my legs.
Apart from physical pain associated with lipedema, there have also been emotional consequences to navigate. As a woman with a larger body size, I have fought tirelessly to accept and embrace the body I have. Just when progress was being made in that regard, this diagnosis came along and brought about further changes to my body, leading to increased feelings of judgment.
Nevertheless, I have made a conscious decision to let go of that shame. When I walk into the gym now to meet new personal training clients, I no longer worry about what they might think or how they might judge me based on my appearance or medical condition. Lipedema is now an integral part of who I am as an individual—a larger woman with her own set of unique circumstances. Nonetheless, I remain dedicated to helping others on their health and fitness journeys.
In conclusion, my experience with lipedema has been an arduous one, but it has also been transformative. Through self-advocacy and continuous research, I have managed to find the necessary medical care and treatments to alleviate my pain and regain control of my life. While the emotional challenges persist, I refuse to let shame define me. Instead, I embrace who I am, including my body size and medical condition, as I support and empower individuals on their own paths towards wellness.