I came across an article on prejudice today that was on my Facebook time-line. I was shocked at the treatment of a person because of the colour of their skin. The husband Samuel Kemble was so in love with his wife, he never realized she would be treated differently than him. I love that he saw the real her and looked past her ethnicity. If only everyone could do that. I realize of course that racial prejudice still exists in this day and and age, but for me it's never been an issue. Call me naive but I've always thought that we Canadians were better than that. We all have the same colour of blood after all so why should skin colour make a difference? Why should skin make a difference at all? My skin is not who I am, it's just a covering that holds what is inside me in place. Unfortunately, it does make a difference and it isn't just the colour of a person's skin that brings out the worst in some people, but it's the amount of it too.
As I read through the Facebook comments on the article, I was gratified to hear the indignation and disgust of how Samuel's wife was treated. But one comment stuck out at me, which got me thinking and brought me here to blog about it. The woman had remarked how she and a friend were at a park and saw a severely obese woman. Her friend remarked that she "would never let myself get that bad," which made the first woman start to think about how brave the obese woman was for walking around and not sitting in a scooter or a wheelchair, but was working to make her body work. She also remarked that it made her think about where the woman had come from, that she might have lost a whole lot of weight and might be proud of the fact that she could now get out of bed and walk around. I was glad that this person thought the best of the overweight woman. However, they inadvertently showed a prejudice to overweight people anyway that I'm sure she didn't even realize she had.
By stating that "she wasn't sitting in a scooter or a wheelchair" the woman implied that overweight people who resort to using scooters or wheelchairs are just lazy. And as someone who has had people say that to her face it reminded me again, how anti-fat bias in this country is something that is not only prevalent among medical professionals but it is also a readily accepted form of prejudice that is used against overweight people on a daily basis.
As someone who has a disease that makes me severely obese I am one of those people who has to sit in a scooter. Many times I've had unkind comments come my way that I am just lazy or had let myself go on purpose. Anti-fat bias and prejudice is just as common and real as the woman in this article experienced. It is socially acceptable to berate obese people, so much so that even governments have targeted obese people to lose weight - for cash! Others believe shaming a person to lose weight is the more appropriate attitude. When you read the comments on that article it is clear - targeting obese people is socially acceptable. But when is prejudice ever acceptable?
Why do people assume that overweight people eat too much or are lazy? Yes, some people do have no self-control, but clearly they have emotional issues that are causing their problems. No one eats to get fat on purpose! That is a ludicrous assumption and I for one am sick of people treating me like I "did this to myself."
I have stage 3 lipo-lymphedema which is two diseases - lipedema and lymphedema. The primary disease is lipedema. It is a painful fat disorder, that if left untreated, can cause multiple secondary problems like lymphedema and mobility issues. Thought to be hormonal in nature, lipedema is usually triggered at puberty but can worsen during (and after) pregnancies, peri-menopause, gynecological surgery or any surgery which includes anaesthesia. It can affect both the arms and the legs and usually presents itself in women with pear shaped bodies. It is an abnormal fat that is resistant to exercise and dieting.
At the time of my diagnosis I was on yet another diet (Jenny Craig) and had a gym membership that I used frequently. I have probably been on every diet known to mankind. As for exercise, I used my gym membership but also liked to swim, bike, golf and walk. Yet no matter how much exercise or dieting I did, I could never seem to lose weight below my waist. My legs were always huge at the top, as were my hips and it wasn't until my first pregnancy when I noticed they were both getting bigger. But the big change in my health didn't come until after a fall down a flight of stairs. This injury (unbeknownst to me) sped up my disease and my lymphatic system was compromised.
While on Jenny Craig I noticed the tissue in my legs (surrounding my knees) was getting bigger and incredibly hard. When I told my doctor he ignored me, insisting that I was making excuses for my size. My nutritionist at Jenny Craig, however began to measure my legs each week and not surprisingly discovered they were getting bigger, while the top half of me was getting smaller. I took this info to my doctor who again ignored me. At this point in time I also found myself in the hospital with frequent cases of a serious skin infection called cellulitis, until finally one day the doctor in the ER (who had seen me all too frequently) asked me why I wasn't getting my lymphedema treated. I looked at him, like he'd grown two horns. Lymphedema? What's that? His shock at my lack of knowledge only grew when he realized my doctor had ignored what was apparent - my lymphatic system was shot (his words) and I needed immediate compression therapy and Manual Lymph Drainage to get it under control or I could end up in serious trouble. When I brought that news to my doctor he once again ignored me. That was the last day I saw him. I immediately went online to search for a lymphatic massage therapist and she informed me that I had waited too long and that I now had stage-3 lipo-lymphedema. This was a good news/bad news diagnosis. The good news was that all the dieting and exercising I'd done without seeing results, was not my fault. The bad news was that I was headed for a wheelchair. My lymphatic system was now shot because of the lipedema and I was devastated. If I had not experienced fat-bias from my doctor who kept insisting I wasn't trying hard enough to lose weight, I could have delayed the progression of this disease with compression therapies and would not be disabled today.
I tell you all this because anti-fat bias has to stop. It has to stop in the medical profession who all to often assume fat people don't have any self-control, when it is more likely they have an underlying disease. Approximately 17 million women in the U.S. alone have lipedema that is misdiagnosed as obesity. It is not their fault they are fat.
And that's the number one problem for people with obesity related diseases. They are shamed by strangers, doctors, the government, T.V., the diet industry and sometimes their own family, when in reality they are probably eating healthier than any of them because of years of dieting, trying to "fit in" to societies norms.
It all comes down to one disease really - prejudice and the assumptions that people make in regards to not only obese people but to people of all colours and races. It's just skin. Get over it. Because whether you like it or not - on the inside we are all the same.
I am not big because I sit around all day stuffing my face with food. I don't eat junk food. I don't drink pop. I don't binge either. In fact, I eat less than 1200 calories a day. I am large because I have a disease that went unchecked for over 35 years (largely because doctors see an overweight person, label them, and make up their minds that "they just aren't trying hard enough") called lipedema, which turned into lipo-lymphedema because the disease advanced. I am currently stage 3 and holding out hope that I won't reach stage 4 anytime soon. But that's another story. You can read all about what I have here.
Last month I saw a surgeon about the gallstones. To give you an idea of the kind of prejudice I go through with doctors and my disease, he wrote on his chart that I was 400lbs, without even weighing me. I am pleased to say I am NO WHERE NEAR that size. But this gives you a good idea of what he was thinking about me while he was talking to me. He informed me that not only did I have gallstones but I had a hernia as well. He would prefer to not touch the gallstones (since they don't bother me [and they really don't]) and because it's so difficult to operate on people of "my size". He then proceeded to tell me that I should stop eating junk food, getting fast food, drinking pop, etc. (all the things I don't do) if I ever hoped to be operated on. I tried to tell him about my disease and he said to stop using that as an excuse. I then tried to tell him I didn't do any of the things he mentioned and he said, "Well you're obviously doing something. You're only lying to yourself." A typical male doctor. Prejudiced and judgmental. He was very lucky I didn't bop him on the nose!
He then told me something "funny" was growing on my hernia. When I asked him what he meant by funny he said, "Unusual, you know...odd." Odd? Funny? I guess I should be relieved it's not cancer because if it was he wouldn't use the word "funny" right?
Flash forward to today. I saw another surgeon (referred to me by the other one) who is going to perform an endoscopy on me to look at this "funny" thing on my hernia. This doctor came in and said he was glad to see that I wasn't 400lbs. and wondered why the other doctor would write that in his chart. He said he was very glad that I wasn't because operating on a person of that size would have been difficult. Good...already I feel better. A nice doctor who isn't judging me. Off to a good start. He then added, "But operating on someone of your size is also a dangerous thing."
Sigh. Moving on . . . he wanted to discuss the "funny" thing the other surgeon talked about. Apparently it isn't growing on my hernia, it is growing on my esophagus and according to him and my medical charts it's been there since my last CT scan (several years ago) that no one bothered to tell me about! He then informed me that it was unusual because it looked like metal. Metal!?! He then asked me if I'd had any operations on my stomach. Nope. Only my legs and abdomen. "Well then," he asked. "Have you swallowed something metal?" I racked my brain. "Maybe it was a penny when I was a child?"
For some reason back in the 60's, mothers used to bake coins into birthday cakes. Could I have had a nickel or dime in my stomach for all that time? He said it looked calcified so...maybe?
"But it could be diverticulitis."
"Whatever it is I'll take it out when I do the endoscopy."
"Okay. Great. So what about my hernia? Are you going to fix that?"
"Well you have two hernias..."
At this point my inward dialogue is something like this: "Why am I only getting little bits of information at a time about what is going on inside me? For crying out loud this is my life, my body. Be truthful and stop hiding things from me! Do all doctors do this? If it's cancer will they even bother to tell me?
Okay, so I have two hernias. How did I get two hernias? Then the thought popped into my head about all my exercising (I do sit-ups in a vain attempt at thinking it will make a difference. I know it won't but I do them anyway).
"Would doing sit-ups have caused this?"
"Sit-ups would definitely make it worse."
Of course they would! (BTW, he never answered the question).
"So . . . the hernias? Are you going to fix them?"
"No...a woman of your size ..."
Really? You're going there? We were doing so well...okay...so a woman of my size?
"Makes it dangerous to operate on you. So unless they aren't bothering you we'll leave them alone."
Really? So all the coughing I'm doing after and during each meal and every drink I take isn't bothersome enough?
"When they start getting painful ... sharp ... excruciating pain ... we'll fix them then."
That's what the other surgeon told me in regards to my gallstones. But he was more, "When it feels like you are having a heart attack, then we'll take them out."
So basically if you are big and you need surgery don't count on it. But if you are in so much pain that you end up in the ER you might luck out and actually get fixed!
If you don't die waiting to be seen in the ER. Which in Canada is a real possibility.
Today I got new wheels. I had to make the decision on whether or not I was going to go into a power chair or stick with my scooter. A physiotherapist recommended a power chair to elevate my legs, but I decided that as long as I can walk, I will not get in a wheelchair. They seem so final. And while they are a safer bet when going to events with handicapped seating (they won't take them away from you) I still prefer a scooter.
What's that you say? They take your scooter at events? You wouldn't believe the stories I've heard. I've even had my walker taken away from me - in my own church of all places. And here's the ironic part - I was at an event where Nick Vujicic was speaking (he's an inspirational speaker who was born without arms or legs) and an usher came and told me someone complained that I was "in the way."
Really? Someone in church complained that a disabled person was in the way? I thought at first it was a joke, so I laughed and said, "Yeah, right." Then the usher stood there looking incredibly uncomfortable and said, "Ma'am, I have to take your walker because you are a fire hazard."
"I'm a fire hazard?" Oh, my goodness I thought this was so funny I started laughing at the guy, but he was serious. And that's when I started to realize he was really going to take my walker.
"You do realize that if you take my walker you take my legs? This is my only way to walk without falling down. Plus...Nick Vujicic event...hello! You are going to make an issue about this at this event?"
Yes...he was and he did. He took it away and I was stranded for the rest of the evening, unable to use the restroom or if there was a fire, escape if necessary, because I had no way to walk out of church!
Then I heard about the poor soul who was asked to leave a movie theatre because she chose to sit in a seat with her scooter parked beside her in the place for the handicapped. Apparently, if she wasn't sitting in her scooter she wasn't allowed to watch the movie. Who makes these rules anyway?
So, now I'm getting nervous - will Budweiser Gardens take my scooter away from me when I go to see Michael Buble at the end of the month? I hope not. There is nothing like being stranded in your seat for four hours. I honestly cannot fathom why people who are in scooters (or walkers) are treated differently than those in wheelchairs. Honestly, would we be using these things if we didn't need them? Of course not! So, listen up Budweiser I'm giving you a warning - if you take my scooter away and leave me more disabled then I already am, I will be writing about it and talking to every news outlet who will listen. It's time to stop treating the disabled like they don't have feelings or don't matter.
I am not a fire hazard. I am unable to walk without assistance. If you take my legs, you take my freedom.
One of the hardest things about having lipo-lymphedema is that no one really understands what you are going through - accept those who have it. June is Lipedema month and I just found that out through a support group I joined. So, I hope you don't mind but I want people to be aware of this little known disease because you may have it but your doctors don't know it and instead blame you for not dieting or exercising (when that is all you do). I am a bit behind in these videos because I just found out about June being Lipedema Awareness Month.
Also, for people who don't have it - when you look at a woman and she is fat, please don't judge her, because she may have this horrible disease and there is nothing she can do about it as it is incurable. Be thankful you don't have it and be considerate.
While my family and friends know me for my loud laugh and my tendency to blurt things out at inappropriate moments (one of my worst flaws), a Lippy Lady has nothing to do with my mouth. A Lippy Lady is a nickname for those of us who suffer from lipidema or in my case lipo-lymphedema.
I don't talk alot about my health situation, but I figured it's about time I said something - if only to bring hope to some other female out there who has struggled for years with her weight and can't figure out why she never loses.
I have a combination of two diseases. The primary disease is lipidema and the secondary disease is lymphedema. Lipidema (also known as painful fat syndrome) occurs exclusively in women and yes it is very painful. It is the abnormal build-up of fat cells in the legs, thighs and buttocks. It usually begins at the onset of puberty and while I'm told it is hereditary, my mother never had it. Currently, over 17 million women have this disease and don't know it! Why? Because their doctors only see fat, not an underlying disease. Plus, I'm told that a total of 15 minutes of training, during a four year medical course, is all that is given to doctors on the lymphatic system. Which is why most doctors do not recognize it.
I spend about one hour a day in a lympha-press. A machine that squeezes my legs in the hopes of moving the lymphatic fluid in my body. The picture above shows what it looks like. It feels like a blood pressure cup on my leg and can at times be very painful.
In the early stages of lipidema a woman will be small on top and wide on the bottom. In other words a pear-shaped body. During each hormonal change (onset of periods, pregnancy, menopause) the woman will notice her behind and her legs getting bigger. When I was sixteen I noticed my legs (at the top) were getting huge. I couldn't figure it out because I was very active - rode my bike everywhere, swam a lot, walked everywhere and was very conscientious about what I put in my mouth. Things got so bad when I was a teenager that I barely ate anything, yet I found it impossible to lose weight anywhere below my waist. I can remember going to the gym with my mother at an early age to work out, with little to no success, and I continued to do that right up until the time I could no longer move my legs without severe pain. In all my years of working out and dieting I became incredibly discouraged and depressed because nothing worked. And with each pregnancy things got worse.
While trying yet another diet (Jenny Craig) and exercise program (Curves) I began to notice a rock hard substance in my legs and it felt like they were getting bigger. About this time my legs started to split open and water would leak out (that's how big and tight they were getting). Unbelievably, when I went to my doctor he refused to listen to my concerns. I have since learned that most male doctors are preconditioned with an incredible prejudice against overweight women. So much so that they will tell you over and over again to go on a diet (even though you're on one) and exercise (even though you do). Mine would insinuate that I was cheating on Jenny Craig, when in reality there was so much food on Jenny Craig that I couldn't eat it all. My counsellor with JC began to notice that I was losing inches everywhere but below my waist (she measured me each week). She also measured my legs and told me they were getting bigger too. She was also concerned that after almost a year on the diet I had only lost 16 pounds when it should have been closer to 50. I went back to my doctor who again refused to listen to me.
In my case, I started to get several serious skin infections called cellulitis over the course of a year or two. After seven or more visits to the ER where I was given I.V. antibiotics and received home-care for a week at a time, one doctor in frustration said to me, "Why aren't you getting your lymphedema treated?" At that point in time I had never even heard the word "lymphedema" before. So I asked him what he was talking about. He was shocked that my doctor had missed something so obvious and sent a letter to him with a recommendation to have me treated with manual lymph massage. But did my doctor listen? Of course not. He could only see the fat. So I dumped him and went to a walk-in clinic, where I managed to get a new doctor who realized right away there was something wrong with me. FYI - my new doctor is a woman. (Yes, I think it makes a difference).
She sent me to a lymphedema physical therapist who took one look at me and said, "I have some good news and some bad news. The good news is that all those years of trying to lose weight with diet and exercise and never being able to lose anything at all is not your fault. You have lipo-lymphedema and it is the reason you can't lose weight."
I wanted to cry. All those diets! All those gym memberships that never worked! All that money invested! I felt like a weight (pardon the pun) had been lifted off my shoulders. I always blamed myself but knew in my heart I couldn't have done anything differently. Still I continued to blame myself. But, now I finally had some answers. So I eagerly awaited her cure for me to lose the weight. That's when she hit me with the bad news.
"You have stage 3 lipo-lymphedema. There is no cure and dieting and exercising will never help you to get rid of it. Your legs will unfortunately continue to grow, but we can with manual lymph massage and compression stockings keep the growth at bay for a while."
Unfortunately, after examining me further she realized the tissue was so hard and congested that I would need surgery to remove it before any treatment could begin. The goal was to reduce the swelling in my legs so that I could get into compression stockings which would keep the disease (supposedly) at bay. She sent me to a specialist who agreed with her diagnosis and to make a long story short I had the surgery, it didn't work and the lymphedema (my secondary disease) kicked in with a vengeance. Five months after my surgery the congested tissue would also return and get so big that I could no longer walk without severe pain.
I apologize that this post is so long. So I will finish up by saying this. The picture to the left is not of my legs. My feet are not quite that bad yet, although they are getting that way. My legs however are almost the same. These are the legs of someone with stage 3 lipo-lymphedema. They get this way because the lymphatic system is not doing its job.
We have hundreds of lymphnodes throughout our bodies and in a normal person the lymphatic system takes all the bacteria, dead blood cells, fat, etc. and filters it through the lymphnodes to the liver, kidney, etc. and all that bad stuff eventually comes out in your urine. In someone with this disease, the lymphatic system gets all backed up with fat and it doesn't filter through and everything gets clogged up and stays in one place and builds and builds and builds until the patient can't even move. Most people with this disease are in wheelchairs.
All that to say this - if you are struggling with your weight and you cannot lose and you've tried everything, don't let your doctor convince you that you aren't trying hard enough. Go to someone who will listen. Below, is a video that will explain this disease way better than my attempts. It will show you what the first two stages look like. I think a lot of women are going to be surprised at what they find.