By Jaime Soderberg
I can vividly recall my nine-year-old self walking the aisles of a local department store with my mother in a quest for a new summer wardrobe. Out of the corner of my eye, I spotted it: the perfect striped summer dress. Sprinting to the dressing room, mom helped me get the dress over my head. Hurriedly, I poked my arms through the holes when suddenly devastation struck. I was stuck, really stuck! Mom pulled, tugged, twisted, and turned as she tried to force those capped sleeves over my chubby upper arms. With a final double fisted yank, off flew the dress. Just like that, my summer dreams lay balled up on a dressing room floor.
This incident became a pivotal moment in a lifelong progression of dressing room nightmares. My weight gain continued. My arms and thighs kept growing despite my active lifestyle. Early on, I came to the realization that something about me was just different. Didn’t all middle schoolers go to a diet center and take herbal supplements in place of cafeteria food? Wasn’t it normal to drive by the local Dairy Queen and see my friends in line while I was en route to my Weight Watchers meeting at age eleven?
Fast-forward some decades. Despite unending diets, crazy fads, bariatric surgery, childbirth, and a thyroid cancer diagnosis -- my body continued to betray me. The pain and heaviness in my limbs increased. The throb and fatigue were so bad that I would end my workday in tears. The pounds were ever so slowly coming off, but the dimples, lumps, and bumps were worsening by the day. Who would have known that my desperate late night Google search of the phrase “fat arms” would lead me here? Here, to a diagnosis. Here, to a world of explanation. Here, to a complete career change at the age of forty-four. Here, to the world of Lipedema.
For many, the month of June signals the start of a long-awaited summer. This is a time to emerge from our cold weather cocoon, a time for less clothing and more sun. But for some, it does not.
I recently took a flight to visit family in South Carolina. Where do I begin? There are the compression garments that include leg wraps and arm sleeves. Do I dare wear them on the plane for fear of the dreaded mid-flight call from mother nature? On to the sweaters and cover-ups. Nothing screams 90-degree weather like layers of unwanted clothing! Capris and long sleeves take the place of shorts and tank tops. Personal comfort surpasses physical comfort this time, and typically every time. My pneumatic pump will need to sit this trip out. Surely it will cause my luggage to exceed the weight limit. Next, I scrutinize our boarding passes. Am I seated next to my husband? Is there a middle seat? Am I with a stranger? Will that seatbelt click?
I give myself a pep talk as we approach the airport and proceed to TSA. I enter the scanner: arms up, hold still. I am directed to step out and gently pulled to the side. “Ma’am I need to pat you down. Your arms were flagged on the scanner. Would you like to do this here or in private?” Mortified -- but not surprised -- I step aside, arms out and allow the kind woman to do her job. She goes over my upper arms repeatedly before I am cleared to go. My husband kisses me on my cheek, asks me if I am ok, and we proceed to our gate.
I made a career change last month. I left the hospital emergency department to work at the Lipedema Foundation. I did this to help researchers and people with Lipedema learn from one another . So what can I share that I’ve learned from traveling? Throughout my experience with Lipedema, I’ve learned that with some planning and patience, I can have an enjoyable vacation. Hopefully my lessons can be yours, too. First, try to stay on your schedule and enforce good habits. A quick grocery store trip on day one kept me from straying from my normal eating routine. Staying hydrated is key. With high temperatures and outdoor activity, I always make sure to carry plenty of water. If you are prone to swelling like me, pack your compression, too! Although it’s not comfortable in the heat, I personally have found that wearing compression for a few hours a day, even in the evening, helps minimize my pain and swelling. Also, make sure to move! Long walks on the beach, although challenging at times, really helped curb my leg pain and fatigue. Lastly, be kind to yourself. I am thankful that this body allowed me to walk, swim, play, and enjoy each day.
The struggle with Lipedema is real, but knowledge is power. At the Lipedema Foundation, we work to combine your knowledge and experiences with the knowledge of researchers. Our goal is to be strategic about research. By pursuing a better understanding of Lipedema, we will discover better diagnostic tools and more targeted treatment methods.
I committed to research by changing careers. You don’t have to go that far, but if you would like to help us on this mission, we encourage you to tell your story by participating in the Lipedema Foundation Registry. While we need my sisters with Lipedema, we also need people who have other related conditions like obesity and lymphedema. Bring a friend and build a research army - find out more on our website.