Living Life with Lipedema

Obese or Ill?

At first glance, you might turn away in disgust seeing three obese women like the ones pictured above. They know. They have all experienced the stares, the whispered words and sometimes, the hateful, hurtful words others feel justified in speaking to them.

Surely these women know that all they have to do is push away from the table and exercise? You might wonder how in the world they let their weight get so out of control. But what if I told you that they are ill? That their fat is diseased and can- not be dieted or exercised away? Would it make a difference? Would you say that they are using disease as an excuse? Would you say that they are just too lazy and like food too much to do anything about their weight? They have heard all of that and more, but the truth is they ARE ill.

They have a fat disorder called Lipedema. Lipedema was first described in 1940 at the Mayo Clinic. Lipedema typically causes symmetrical weight gain below the waist, in the stomach, hips and thighs but can also affect the upper arms. The fat is painful and fluid filled. Published medical data verifies that this diseased fat cannot be dieted or exercised away. As the disease progresses, it often leads to secondary Lymphedema. There is no cure for Lipedema and treatment consists of Manual Lymphatic drainage, compression garments, wrapping and sometimes, liposuction. Lipedema affects mostly women, but there are a few rare cases affecting men. This disease is poorly understood and often misdiagnosed in the United States, but is well known in some European countries, especially in Germany where it is treated with liposuction.

Lipedema can be managed more successfully when diagnosed in the early stages, so awareness is key to obtaining an early diagnosis to help slow the disease progression.

Early treatments include: Manual Lymphatic Drainage, Compression garments/wraps, use of a lymphatic drainage pump, non-impact exercise, such as warm water therapy/exercise and a healthy diet.

When I decided to write about Lipedema, I asked for stories from those who suffer with it daily. I asked them to tell me how it affects their lives on a daily basis, what daily challenges they face and what they think the future holds. Their stories are full of heartbreak from being misunderstood by the medical community, their families, their friends and from suffering the humiliation and offending comments from the general public. While the heartbreak is gut-wrenching to read, what impressed me most was their indomitable spirit and their desire to live life to the fullest despite all of the obstacles. Here I give you their stories in their own words…..

Lynne Ashe: The hardest part about living with Lipedema is that it has tried to rob me of who I am at heart: I am naturally a free spirit — one who likes to laugh and to frolic. Lipedema is like wearing shackles, weighing me down, draining my energy — pain trying to steal my smile. The one place where I feel I’m free is in the pool. I can run, jump, skip, dance. I have freedom of movement and freedom from pain. I laugh. I sing. I dance. I play. I live for those moments. I can be me when I’m in the water.

Pamela Harrison: I tried to be compliant with the MLD and garments, and managed for about 6 months, but I just can’t afford to spend the $800 every three months for off the rack garments. For one thing, the stockings cut into my lipedema ankle ring and give me a rash at the top. To get the right fit, I’d need custom tights and, if I can’t afford off the rack, I sure can’t afford custom garments. The arm and hand garments were comfortable, but, at $150 per arm for just one set, way too expensive. My insurance doesn’t cover garments at all, so I don’t even get a negotiated price. I still wear torso compression because I have abdominal hernias and I can’t not keep pressure on those, but I am using control camisoles and girdles for that. A friend sent me her old lymphapress,when she got a new one, and using that helps with the swelling in my legs. I am frustrated with the whole thing. I am so misshapen I don’t fit into most public seating, but I can’t stand for more than three minutes now and I certainly can’t walk more than fifty feet anymore. My legs and arms ache a lot of the time. People stare at me and not in a kind way. Fat people are harshly judged by others and that makes living with this much harder.

Judi Smith: For several years, I had the symptoms of Dercum’s Disease/Lipedema, but didn’t know what was wrong. I finally got a diagnosis about 7 years ago, but still no prognosis or adequate treatment. At the age of 64, I have been through many challenges, and I have treated this like any other challenge–by taking control as best I can. I do things at a slower pace, less physical than before, and have developed some new interests that are within my abilities. But I am still active, and looking forward to whatever is in my future. I don’t sit around wondering what my future will bring, just hope that a treatment, if not a cure, for Dercum’s Disease and Lipedema is on the horizon, especially for those younger than me.

Carol Henning: I only learned what it was called about four years ago. Frustrated, (after searching the net for answers, for years) I typed in BIG FAT LEGS, and went to bed. The next morning there was information naming my problem and giving me hope. At that time I was going into stage three.

Still, in spite of my acclamation to family and friends, that I had finally discovered why I had such big hips and thighs… they still replied that I needed to go on a diet. Even my doctor kept telling me to lose weight and even told me within the past year that I had to lose weight before she could do a pelvic exam! This doctor was named the third best Internal medicine doctor in the entire DFW Metroplex during this time! I had told her about Lipedema, but it did no good.

No one would believe me, and most still don’t! Even friends who had known me for some forty years still tell me to go on a diet. Well, I did… many times, but it didn’t take it off my hips, buttocks, or thighs. I was often embarrassed, like when I was on small plane with a boyfriend, I was told to sit at the back in the middle… and in a boat I had to “balance it” by sitting in a middle seat. On another (commercial) flight, I was told to move from the emergency door exit seats as I was “a hindrance in case of an emergency.” There are many, many more instances where people liked me until I stood up and they saw my horrible thighs, buttocks, and hips.

I was put on Coumadin after blood clots (were found in my left lung) for two years! I grew outward to a point where I couldn’t get into ‘store-bought’ clothes. Finding someone to sew for me, was even more of a challenge because of my size.

Finally, I got so huge that all but three friends would welcome me into their homes. (And I may have turned one of these dear friends against me this past month by pushing my chair too close to her wall and perhaps marring it… when struggling to get up.)

I don’t know where to turn. I went to a local (advertised as a) lipo-lymphedema center that massaged my legs, etc. upward to drain off the water. No water came off! It was a waste of time and money. She insisted on wrapping my ankles and feet even though I assured her that from my extensive research on the net, that I knew that my normal ankles and feet were not affected by Lipedema. She assured me she knew that it would pop out somewhere if she didn’t wrap everything to my toes.

The mental pain of knowing no one will do anything or even accept my condition exists … is worse than the physical pain which is tolerable only with hydrocone for my knees which are badly damaged from an accident. (My legs hurt to the touch, and my feet are very sore and hurt when I stand up.)

Often, I sit on the side of my bed after I wake up in the morning for about a half an hour, trying to get up the strength (mentally and physically) to tolerate the pain of standing up and walking to the bathroom. Everything hurts the most on getting up, from my bed, or after awhile in a chair. I use a wheelchair but I like to use a walker for short walks.

Carole Reed: All of my life I have been told, “But you have such a pretty face”…as if I would only lose weight, then I would be perfect and acceptable. I tried every diet known to man and exercised to exhaustion; even sat on a roller machine that was supposed to beat the fat off of me by breaking it down so it could be flushed out of my body. All I got was fatter and bruised. I spent many nights lying in bed crying because I felt so inferior. If losing the weight was simply a matter of cutting calories and exercising, I should have looked like Twiggy! It wasn’t until I saw pictures of my bare body (taken for a doctor) that I was able to understand and forgive myself for being fat. It was cathartic. I sobbed. I finally saw myself as a sick person and not a weak willed fat person who ate too much and exercised too little. I finally understood it was not my fault. Even though I have developed a begrudging acceptance of my body, I still won’t show my thighs in public. That makes life harder when you live in a tropical climate near a beach..means no shorts…no swim suits.

I hope the future will bring awareness and better treatments for Lipedema along with an attitude change within the medical community and the general public so that those of us with Lipedema can hold our heads up without fear of ridicule.

Sylvia Burleson: I have diabetic neuropathy also and venous stasis so my feet do not appreciate being wrapped and I don’t know if the wrapping is good for that. They always say not to put anything tight on your feet so I am conflicted about using them. My husband and I were trained in using the wraps..the kind with the foam layer and elastic layer applied really lightly. I can’t go anywhere or wear shoes with the wraps on. I find that the swelling is better if we wrap everyday but sometimes I have to go to the doctor or shopping or have company. I can’t just sit around with the wraps on all the time. When i wrap my swelling does go down. After 6 hours or so they sting so bad I have to take them off. The swelling increase as the day goes on. I Ttry to keep my feet elevated on two hassocks as much as I can’ keep them up all the time.

I have several other problems in my feet like torn ligaments but they will not operate on my feet as I am at high risk for getting into cellulitis or amputation. My feet sting all day. I can’t stand Jobst stockings that cut into my ankles…they just hurt way too much. My husband massages my feet every day trying to push some of the lymph out. We have not been trained in the massage yet as we can’t afford it.

When I put my feet over the side of the bed when I first wake up I look at my feet to see how swollen they are. I have to wear shoes that will allow enlargement of at least two sizes, I call my feet ball-feet as no shoes are made that accommodate them. I get xxx wide and they still leave marks on the tops of my feet.

The swelling hurts. I rock in my recliner pressing my feet against the hassocks to massage them. The pain is constant..but a little better if my feet are elevated. If I keep my mind busy I don’t mind the pain as much. I get sprained ankles all the time. I had two MRIs of my ankles and they just show badly sprained ankles..they are not sprained..they could not have stayed sprained for 20 years.

I am worried about my toes as they are so numb. When your feet and ankles are full of lymph you cannot walk without pain. I use a wheelchair all the time now. Without my husband’s help I would be in assisted living. I know some people have swollen feet and ankles and do not have the severe pain that I do. When the doctors just barely press around my ankles the pain is intense.

When I want to visit my grandchildren or go out to eat or have people over…I just pay the price of increased swelling and pain. We want to have some fun in life. Being in constant pain makes this difficult…but I persevere and still find joy in living.

I accept my husband’s help and do just what I can.

In conclusion…. Lipedema hurts. It hurts the body and it hurts the soul. It steals many of life’s simple pleasures. Treatment is expensive and time consuming and not always covered by insurance.

Research is needed. Awareness is needed. Compassion is needed. Funding is needed.

Perhaps after reading this, the next time you see an obese person you won’t be so quick to judge. My hope is that you will find a kind word for them and look beyond the exterior to see their heart and discover their indomitable spirit.

A good exercise for the heart is to bend down and help another up.

Carole B. Reed
Secretary
Fat Disorders Research Society, Inc.