Living Boldly With Lymphedema and Lipedema
Editor’s Note: Sarah Bramblette is the first-place winner of HealthCentral’s Live Bold, Live Now Photo Contest. This is her story.
Since this story was written, Live Bold contest winner Sarah Bramblette was featured on the hit television show The Doctors. We encourage you to view her segment to understand more facts about Lipedema.
I have been affected by obesity my entire life. My obesity is based on body mass index. However, I never suffered metabolic effects from my excess weight. There are three dimensions of obesity: weight, metabolic disease, and body image. My highest known weight was 502 lbs., but much of that excess weight was due to Lipedema and Lymphedema.
Understanding Lymphedema and Lipedema
I was diagnosed with Lymphedema in 2001, which is characterized by excess leaking fluid underneath the skin that causes arms, legs, or other body parts to become swollen, also known as edema. It took nearly two years to get a proper diagnosis and treatment. The reason? Doctors were blinded by bias, and blamed my weight for the problem, rather than a medical condition.
After undergoing roux-en-y gastric bypass in 2003, I lost significantly more weight above the waist than in my lower body. I was an active member on ObesityHelp.com and had met another Lymphedema and RNY patient who told me she had Lipedema. It sounded like what I was experiencing. In 2004, after moving to a new city and seeing a new Lymphedema specialist, I was officially diagnosed with Lipedema, which is a condition affecting fat cells in the body, particularly the legs and buttock.
The reality is I was born with Lipedema. I can look back at childhood pictures and see the difference in size between my lower body and my upper body. I always believed there was something different about me, as I never felt fat, or perhaps because I never fit the stereotypes. Of course, stereotypes are rarely accurate—that is the problem. I was never lazy; I ate the same as my siblings and friends; I rode bikes and played outside same as them. Yet, I always weighed more and progressively gained weight each year.
Taking Control of My Health
In my early 20s the excess weight and lymphedema really began to impact my mobility and complications, such as recurrent cellulitis, landed me in the hospital requiring IV antibiotics. I was scared for my life, and so were others. My best friend expressed her concern for my health. I had never let my weight affect my life; I had become a master at accommodating my life to my size. But once it was affecting my health, I was scared and I wanted help.
I found I had to help myself. The first doctor I saw for help simply said my legs were “because of your weight,” yet did not have a scale to weigh me nor proposed any help for losing weight. On the next visit I asked for physical therapy. It was at therapy that I began walking in the pool and discovered water aerobics. Being in the water was pure freedom for me. I could do more exercise in the pool than I could ever do on land.
In addition to exercising in the pool, I began treatment for my lymphedema with a compression pump and receiving manual lymph drainage and compression wrapping by a physical therapist. The treatment presented many struggles: physically, mentally, and emotionally.
Physically, the compression pump and wrapping were both painful and inhibiting. Spending hours tethered to a pump was mentally difficult, as was trying to be mobile with my legs wrapped from toe to groin like a mummy. It was difficult to find shoes and pants I could wear when wrapped. In order to be effective, compression wrapping needs to be consistent, which means initially I was wrapped 24/7. I would go to therapy three times a week, only able to sink in a bath in between appointments. It made working and going to school very challenging. My quality of life was greatly impacted. I also continued to battle cellulitis and hospitalizations during this time.
Emotionally, having a diagnosis gave me hope that I could improve my health, and that the excess weight was not my fault. However, it was also difficult to accept, since much of the weight was due to Lipedema, so no amount of diet or exercise would ever result in me being a normal weight. But Lipedema is an explanation, not an excuse. Just because diet and exercise were not going to result in weight loss, did not mean I did not need to live a healthy lifestyle.
Seeing the Positive
My family, friends, co-workers and classmates were very supportive of me. Even if someone did not fully understand the condition, they at least recognized I was suffering with a medical condition and, more importantly, I was doing my best to get treatment and improve my situation in life. While I do encounter negativity from strangers, overall the amount of positive support outweighs the negative.
Actually, I see my weight as a great benefit in meeting new people. I do not want anyone in my life who would judge me because of my weight. The people who take the time to see past my surface appearance get the benefit of knowing me and my story, and in exchange I get to know them and their story.
Making a Difference
Once the initial treatment ended and I was in a maintenance phase, the most challenging aspect of living with Lipedema and Lymphedema was access to health care. Insurance coverage for enough treatment sessions and compression garments has always been a battle. Although, it is a battle I have learned to win with each new insurance company I have encountered.
However, policies are constantly changing. That is why I’m advocating for passage of the Lymphedema Treatment Act. The other challenge is weight bias and stigma I encounter in seeking medical treatment. I have experienced doctors who do not believe or accept that my weight is caused by other factors. I joined the Obesity Action Coalition because of their advocacy efforts and stance against weight bias and stigma.
In the decade since being diagnosed with Lipedema, I have had to learn to balance my need to live a healthy life with my need to live a meaningful life. That might mean I do not wear my garments every day, because my legs need some freedom and comfort instead of restriction. I have learned to be persistent with advocating for my health care needs. My personal experience navigating the healthcare and insurance system lead me to pursue a career in health care. In addition to my advocacy initiatives, I am currently working on a master’s in Health Law and hope to continue making a difference for others.