Living With Lipedema

Summer 2017_Chispa Magazine - Lipedema Cover Story-Stacy Ann GrossAfter receiving the diagnosis of Lipedema, all heads turn to the Internet for the glory answers of what, how, and the why. And of course, who else? You view minimal reporting from doctors and remind yourself, “That’s probably why my family doctor thought I had painful cellulite.” Yes, you are shocked, and agree to never return to a doctor who believes in such falseness. By the way, we did our research and indeed, there is no such thing as painful cellulite.

Back to your online searches. You soon discover, you’re not alone. There are multiple support groups on Facebook… from Canada, the UK, Australia, and the proud USA. You come to the reality that you are in dire need of a sisterhood, as your dear husband truly doesn’t understand, yet wants to help. You first encounter Lipedema Sisters USA, and that’s when you see pictures of Stacy Ann Gross from Lily, Kentucky with head held high, baring her legs, and you crumble. You’re half her size, yet you can’t stand wearing summer short-shorts and despise the thought of a sleeveless dress, even though Hotlanta is sparking up its record for the hottest, stickiest-summer since your arrival from Miami. Who is this Stacy Ann Gross and what took place in her life that makes her so bold, so carefree? We had to dig in, and indeed we dug deep. We didn’t met a fat girl with a wonderful personality. We met a woman full of grace, encouragement, and beauty. In a book-like setting, here’s her story.

“I realized early, my family was not like most others. My earliest conversation with my mother, regarding my father, was her telling me that he hit her while she was pregnant with me. And then, she left him. She left the state to move back to a small town in South East Kentucky to live with her mom, my Mammal. I was my mom’s third and last child, but I was Mammal’s favorite. I was her little shadow and ate up all the attention she would give, and all the food she would cook. I was a good eater. She bragged and so I ate more, and she bragged even more.

If I cleared my plate fast enough then I must need seconds, and I never turned them down. She was a wonderful cook. She always made me feel pretty and special. My dad was never around so Mammal had to be my second parent. My mom briefly remarried, but decided that being a single parent was what was best for us. When she was married we still lived within walking distance to Mammal’s house. After dinner at home I would walk over to Mammal’s where I would typically have a second dinner and other yummy treats. I remember clear conversations about how I doubled my weight the first year mom was married. I remember not having many cute clothing options for my larger size. I always had a bubble butt, but now, things had changed.

Even after I gained weight I felt pretty. My Mammal was so loving. Mom always joked that I was so conceded, I would only use the chair at the end of kitchen table so I could watch myself eat in the reflection of the china cabinet. When Mammal died soon after I turned 11, things started to change for me. I went from the kid who felt cute, in spite of being chubby, to the middle-school-girl heading into puberty. Before starting the 6th grade, we went clothing shopping; I wore size 16 jeans. That is when I started feeling self-conscious of my size. It was the age where kids started worrying more about fashion and name-brand clothing. I knew I would never fit into Abercrombie & Fitch. I tried dieting a few times and never did well. I started wearing looser tops and jackets that covered my butt.

In the 9th grade, in pure summer heat, I was at an after-school program. And yes, I didn’t have my jacket on. We were all laying on the floor, doing out homework, and remember this moment clear as a bell: A girl I knew walked past me and said, “Oh my gosh, Stacy! I didn’t realize you have such a big butt!” I looked at her shocked and expected this to be an insult. She realized I was offended and quickly snapped back with, “That is so hot! You have a great _ _ _!”

I don’t think I ever wore that coat again… unless I needed it. That one single conversation literally was the pivotal point where my body image changed. Sure, there were times when I cringed at comments, like when I changed schools my junior year of high school. I was wearing Capri bottoms and was asked why my calves where so huge. The girl went on and on for a few minutes about how she had never seen someone with legs like mine, yet my top was so tiny. But, it didn’t shake me. I still wore skirts just above knee-length and was a happy person, and felt attractive.

Thoughts of the future? I think most people can relate to expecting your diet to work. Day one is always optimistic. I am going to get back down to this particular size and I will never gain it back. But then you lose weight, throw in the towel, and are back to your pre-diet weight in no time. I have never had the unrealistic expectation of being thin. I shaped up in high school and was more active. I graduated high school wearing a size 16, the same size I wore entering middle school. When I dieted I just wanted to be in a 16. Is that too much to ask? I honestly never envisioned myself, ever, being a size 14.

After I turned 16, I wanted my own money, so I got a job. I worked until I graduated high school. I was working at a local steakhouse, as a hostess, my senior year. My now-husband came in to eat with a big group of friends. I was single, and he was cute. So I asked the waitress to go talk to him for me. I couldn’t leave my spot. Even though I had only recently turned 18, I still lived at home and I had one rule: I couldn’t date anyone old enough to buy alcohol.

Lucky for me, he had just celebrated his 20th birthday. Best of all, he too was single. We spoke for about two months before we started officially dating. I had high standards and did want to waste my time with someone I could not see a future with. I wanted to know him well and we told each other everything. He was a former high school football star and still had a trophies wall at home. Even though he was thick, he still had great arms and was toned. I was fluffy, but was full of personality and self-confidence. As much as I tried to put on an outgoing front, I still had a tiny little pebble of doubt deep inside of me. After all, I was a chubby girl dating the hottest guy I had ever dated.

One day, after a few months of dating, he told me he had been contacted by his former high school girlfriend. They had to break up because her family moved out of state. But, here she was, had moved back, and wanted to know if he was single. For a split second I thought he was about to break up with me. I had seen pictures of her. She was so cute and thin! Trying to not act as though it was a big deal, I asked, “Well, how did that conversation go?” In a duh-like voice he answered, “I told her, I am with you.” He never spoke with her again. At that point, I knew that my size was not an issue and it made me fall deeper in love with him.

By the time we got married, I had gained about 65 pounds and he was about 100 pounds heavier. After having my oldest child I hit my highest weight, 340 pounds. I was feeling quit miserable and planned yet another diet. This time I decided to measure a few parts of my body. I put that piece of paper on a book shelf, and forgot about it. I lost 25 pounds and six months later I became pregnant. Dieting stopped, yet I continued to slowly lose weight.

By the time my daughter was one, I was diagnosed with Graves’ disease. I had been so ill, I lost weight and was down to 260 pounds. One day while clearing off the book shelf, I found that piece of paper with my measurements from 80 pounds heavier that I had written about two years prior. I worked my way from top to bottom re-measuring. I had great loss in my bust and waist, yes, I super impressed that I had lost 16 inches off my waist. Whoo-hoo! Then I measured my legs. Holy cow! How was this right? One inch!?

How in the word had I only lost one inch off my legs? So off to Google I went. Darn, the answer was right there. How did I not know this? How had no doctor not diagnosed me?

I joined a Facebook group. In spite of never feeling ugly, I never felt I looked typical. Here I am, with a ton of ladies whom I fit “in” with. I saw my primary doctor and a second family-care doctor and asked them about my legs. Both of them said that Lipedema is just a word for fat and suggested a diet and a workout routine. Interestingly enough, while at my endocrinologist office [being seen for Graves’ disease] a doctor talked to me about lipedema. They asked if I could show them my legs and asked me questions. I told them I strongly suspect that I have lipedema, but my family doctor refused to talk about it, and brushed me off. She agreed, and said, she knew I had it as soon as she walked into the room—and was shocked that my doctor was uneducated on the matter. It is crazy how my family doctor refused to acknowledge the condition, but my endocrinologist put off talking about the “real” reason for my visit and instead, began to talk about my legs.

Although I never felt ugly, it was freeing to know why my legs looked odd. I became more kind to myself. I lost the urge to diet, because I realized that a simple low-calorie diet was not going to change my body. Actually, losing the 80 pounds cleared that up for me. My legs were not going anywhere. As a matter of fact, they were growing.

After being treated for Graves’ disease I started gaining and got back up to just over 300 pounds. Again, I looked up those measurements. I had gained back half of my inches in my bust and waist. I took a deep breath and wrapped the measuring tape around my thigh to see, not only did I gain the one inch that I had lost, but I had gained six inches. In spite of these growing numbers I still live life. I have a daughter who will look to me to set an example. Sadly, eating disorders have roots in how children are raised to view body image. I don’t want her to think fat is ugly. The way I talk about myself will become her inner voice. I verbalize when I feel pretty. Her father compliments me in front of our children. We tell her she is pretty. She tells me, all the time that I am pretty because fat is not something we talk about. Knowing I have lipedema only improved my self-love. My 105 pound, 14-year-old step daughter picked out my swimsuit this year; a two piece pink polka dot bikini. Even she knows that my body is not an issue and was proud to go swimming with her 300 pound step mom, who happens to have huge legs, wearing a bikini that exposes everything.

Genes? My family always joked that no one in my family had a butt, however I have enough to share with everyone. When I look back, my mom certainly has lipedema in her arms and legs. Honestly, I got hit with all the bad genes. My mother has two autoimmune diseases, as did her father. As a result, I acquired one, and then, you look at my brother and sister and both are thin and healthy. I find comfort in knowing this is genetic. Sometimes society shames people into feeling less than because of excess fat. Knowing it was just a bad roll of the dice brings me peace. My daughter is at bad odds. I already know she is at a 50/50 chance of acquiring an autoimmune disease.

She got a pretty bad bruise on her thigh recently, which leads me to think that lipedema is going to be part of her future. She is four years of age and of average size. Only time will truly tell, but I fully expect her to take after me.

Medical care? Sadly my experience has led me to think that medical staff are certainly lacking in basic lipedema knowledge. I never expected confirmation about my “suspected diagnosis of lipedema” at an appointment for my thyroid. I know there are doctors all over the country who specialize in this disease, but it is not within my ability to travel long distances to see any one of them. If more doctors knew how to adequately recognize and treat lipedema, then more people could get the care they need and deserve; and perhaps even change the mentality of painful fat versus lazy women.

Self-care? I have always taken cues from my body. When my legs hurt, I sat down. Now, I am a little faster to listen and not push myself as much to keep going when I know I shouldn’t. I prop my feet up more. Some ladies, who have local providers do specialized treatments. I have not personally done any due to lack of professional care in my area.

As a stay-at-home mother of three young children, I feel my days are not much different than other parents with a similar family structure. It is hard to keep my children active when it is difficult for me to stay on my feet long. When we go to the park, I generally take turns with my husband staying with my littlest baby. About five minutes is my limit. When we go shopping for groceries my ankles hurt, it is exhausting to shop. By the time I get to the car, I don’t want to stand back up. I know it will not be much longer until shopping defeats me and I will need to use a wheel chair. My husband and I went on several dates every week, we enjoyed going to the movies and out to eat. Now we spend a good chunk of time video gaming together. I have always enjoyed crafting and continue to make quilts and other sewing projects.

Life? Life is beautiful. Sadly I frequently see a lot of people with lipedema extremely unhappy about the way they look. I truly feel that beauty comes from within. While mobility will become difficult, I am thankful for the good days. It is easy for me to be thankful for what I have because I know people with more severe issues. Why should I complain that it hurts to talk? At least my legs work. They may not be beautiful, but they work.

I am lucky to have a wonderful husband; he makes me feel attractive and we have a strong marriage. I didn’t want to settle and I don’t feel like I have. While we may have a few disagreements, I have been told by friends, they wish their “big arguments” were as small as ours. Apparently our big disagreements are for some, daily annoyances. We agree on the big things that really matter, especially our parenting choices. We teach our children that everyone is beautiful and try to craft the way we speak about them, ourselves and others to reflect that. We want our children to be accepting because they too should want to be accepted.

Regarding fashion, buying clothes is super difficult for both my husband and I. He has a long torso and well, I have lipedema. This does make being fashionable slightly more difficult. But, I also know I am great with my sewing machine and can make corrections when needed. And, I am finding a new love for skirts. Most people like to hide their large arms, but in the summer I would rather show them off than try to find clothes that are uncomfortable. I recently purchased a dress online, which is typical a “huge no-no” when your body is not of average build. I literally could not get the sleeves past my elbows… So, I removed them! I don’t allow this body to limit me because a needle and thread can fix anything to make it fit. Chairs are a different story. I avoid seats with armrests because my hips have gotten stuck.

Because “people” don’t know or see the biology of your body, you could get the “you’re fat cause you’re lazy” stare versus if you were hairless, you may get the “I feel sorry for her cause she has cancer” look. How does that make you feel? I live in own bubble. I can’t waste my time paying attention to others. It is not important to me. One day, while shopping with a friend, I breast fed without a cover. My friend asked me how I handled everyone giving me looks. Honestly, I had not even noticed. She said, she had seen at least five people giving me strange looks. If people give me a shameful look because I am fat then I don’t notice because I honestly do not care. I don’t allow room in my life for that type of negativity. If people feel they need to waste their time expressing their disapproval of me, then that is on them

Our world’s view on “fat” people? I think it depends on where you live. Generally speaking, thin is the standard of beauty. But that is slowly changing. Not fully changing, but changing none the less. I love the new products by Barbie. I like that my daughter will have the choice of having a more voluptuous doll with more reasonable proportions. She will likely never have a fat doll, but at least she is not as limited. I am glad to see body positive features in reality shows.

I don’t think being morbidly obese will ever be accepted. That is okay with me. I don’t personally need someone to tell me that it is okay for me to be me. I feel is it my responsibility to change the way people view fat people. I am not going to sit on the side lines and watch others have fun because of my size. I am going to put on a swim suit and enjoy myself. People will generally treat you the way “you” show them “you” should be treated. People can read body language. If it is clear that you are not happy with yourself, people will not walk up to you and tell you, “Hey, you look great.” If you are “rocking it” then you will attract positive attention. I don’t ask for pity and I don’t feel as if I have get it. But then again, I put myself in a bubble and don’t care what is outside of it.

I believe living a life that empowers you to be secure in who you are and feel loved, acceptance comes from surrounding yourself with people who care and do not drag you down. As a parent it is my primary goal to raise my children to be people who care for others and live by the golden rule: Treat others as they expect to be treated. It is powerful to have the influence on three young people.

I think everyone goes through seasons of life. Right now I am the leader in my family. My children look up to me to provide for them. I am my family’s housekeeper, chef, cutter of hair, and kisser of boo-boos. One day my nest will be empty and my body will be more tired—I do worry for that day to come. The day that walking will be more of a struggle, I will need to accept help. The day will come where I will not be needed the way I am now. Everyone experiences this on some level as their children move on in life. One day, I will be on the other side of this. One day, I will need a housekeeper and standing to cook may not be within my abilities. I hope I can pass on all my skills to my children so that one day I can call on them.

My hope is to raise well-rounded children. I encourage them to be loving and I pass on my love for everything. I hope that the impression I leave on people provides encouragement for them to also shine a light for others. I strongly feel that tiny pebbles of kindness leave ripples through communities. I hope to spread love and show people how to gain acceptance for themselves and others. People are more than their outward appearance.”

“Lipedema is a poorly understood disease in the United States; statistics show it is markedly under-diagnosed in this country. Lipedema is a painful fat disorder that, if untreated, can cause multiple health problems leading to mobility issues. The quality of life, emotionally and physically, for a Lipedema patient often suffers because the disease is typically dismissed as simple obesity.

Lipedema is a disorder of adipose tissue that occurs almost exclusively in women; it has also been called painful fat syndrome. Typically there is abnormal bilateral and symmetrical swelling of the legs and hips that extends down toward the ankles where the fat forms a ring just above the ankle. This swelling is due to accumulations of fat and fluid in the tissues under the skin. This disorder can be inherited; most cases gradually develop during puberty, although it may develop or worsen due to trauma, such as surgery, peri-menopause or pregnancy. Lipedema has been seen in morbidly obese people and in anorexic individuals. Lipedemic fat cannot be exercised or even starved away. There are estimates that put the incidence of lipedema as high as 11 percent of the adult female population. We are talking millions of women here.” —

Mavian Arocha-Rowe

Mavian Arocha-Rowe

Editor-in-Chief at Chispa Magazine
Mavian Arocha-Rowe is known as an asset to the business and communications industry and is motivating and advocating “your authenticity should be your strategy,” for all women, regardless of their season and roles. For the past 20 years she has directed magazines, plus multiple art and marketing departments as creative director and brand manager. What supersedes all of her great career moves is her role as wife and mother living in Atlanta. Challenging herself to discover and bravely pursue the calling for her life, Arocha-Rowe helps other women discover and pursue their life’s assignment. She is a passionate, and loud-laughing speaker on the topic of purposefully redeemed, and mentors young women so they can exercise a mind that is doctrinally pure, along with a heart that beats toward sanctification. She will almost never turn down Marlow’s Tavern double-tavern cheeseburger, a cooking-demonstration from Leaning Ladder, or any opportunity to head to Miami to spend time with family.

Mavian Arocha-Rowe

Mavian Arocha-Rowe is known as an asset to the business and communications industry and is motivating and advocating “your authenticity should be your strategy,” for all women, regardless of their season and roles. For the past 20 years she has directed magazines, plus multiple art and marketing departments as creative director and brand manager. What supersedes all of her great career moves is her role as wife and mother living in Atlanta. Challenging herself to discover and bravely pursue the calling for her life, Arocha-Rowe helps other women discover and pursue their life’s assignment. She is a passionate, and loud-laughing speaker on the topic of purposefully redeemed, and mentors young women so they can exercise a mind that is doctrinally pure, along with a heart that beats toward sanctification. She will almost never turn down Marlow’s Tavern double-tavern cheeseburger, a cooking-demonstration from Leaning Ladder, or any opportunity to head to Miami to spend time with family.