BMI Doesn’t Work for Lipedema

This is an questionable area of concern that is used by clinicians to determine your eligibility for medical treatment and products.  I am talking about the use of the Body Mass Index (BMI), a measure of your height to weight ratio  which attempts to calculate whether you are underweight, overweight or in a normal healthy range.  You can calculate your BMI here.  My BMI is 76 and am considered Super Obese by the chart below.

According to the classification I am even too large for safe bariatric surgery, which I don’t need or want anyway.  Most of my weight is Lipedema fat and Lymphedema from my waist down and in my upper arms.  Without this weight I might still be considered overweight, but with these diseases there is not much I can do at this point to magically shed the weight to make me “normal” again.

In fact, if we suffer with additional weight caused by irreversible medical conditions should this chart even apply to us?  Wouldn’t this chart be more applicable to those with true weight management issues, or obesity? And what about those whose muscle mass makes them overweight or obese by this chart?  There is more than just normal burnable fat in play here.

I have encountered and seen others suffer from the weight bias when visiting with clinicians making general assumptions about our size and BMI numbers.  You can hear the judgement and near disgust on “how we could allow ourselves to get so big” and we most certainly “must have an unhealthy lifestyle” to get this big.  Every time I go to the clinic, usually in my manual wheelchair I get a lot of stares all thinking the same thing.  None of these people know or would probably understand my condition, including those that are treating me.  They all believe if we just address our weight issues first then all our other problems will disappear.  Really? Let’s see how that worked out…

Attempt at Weight Loss and Exercise

I have had several people talk to me about making an appointment in the bariatric surgery department to address my weight problem.  In fact in 2014 after I lost my job I aggressively turned to addressing my weight and medical issues.  Since many people felt I needed to address my weight problem first I enrolled in an online eight week Weight Loss Management class through my health provider.  I talked with the nutritionist, as was required due to my large size, and agreed that 1200 calories per day for others was too low for my frame.  We settled on 1800 calories per day and could go as high as 2200 if needed.

We were required to record all the food put in our mouths and all exercise we did each day for those eight weeks. After two weeks of tracking everything (I used MyFitnessPal, which is a great tracking tool), I logged into our class session where I saw people had lost 2-10 pounds.  I had lost nothing.  Even though I stuck to my 1800 calorie per day diet and did my 20 minute per day exercise routine (I used the Sit and Be Fit video where you can sit through all the different stretching and exercise routines) I didn’t lose one pound.  I felt like a failure!  Maybe I really needed to reduce my intake to 1200 calories per day?

I did my next week at 1200 calories per day with the same exercise routine and regrouped with the class at the end of the week.  Guess what?  I still didn’t lose a thing.  Now I am frustrated and looking for answers.  I met with the instructors at the end of class and they said I should try increasing my exercise type and duration.

The following week I did 1200 calories per day and even had a couple of days at 900 calories per day, which made me very light-headed and dizzy most of the day.  I found I couldn’t increase my exercise regimen as pain levels in my legs and upper arms started to hurt.  At the end of the week we recorded our successes again and this time I lost two whole pounds while others were already in the double digits. It must have been those 900 calorie days that did it, however, I was sick and dizzy from not getting enough nutrition on those days.

More than halfway through the program I had only lost those two whole pounds with no answers why I was wasn’t losing more.  It was also suggested I might be cheating or eating too many sweets during the week.  What?  I am making the most serious attempt in my life and they couldn’t see it.  Instead they suggested I call the bariatric surgery department and pursue a possible surgical solution for weight loss. When I called them they were all to eager to sign me up for a consult without even seeing me or asking if there were any other complicating factors.  I declined because I felt it wasn’t really the right answer for me.

I finished the class, classified a success as I did lose two whole pounds, and learned how to balance my caloric intake each day!  I was more frustrated than when I started and determined to find answers. How does anyone make this much of a concerted effort to lose weight any only lose two pounds in eight weeks?  There must be more to losing weight than just counting calories! This class really opened my eyes that there was more going on with my body, especially when caloric intake did basically nothing for me and even basic exercise hurt.  This was not normal!  I just needed to do more research.

What I Found Out From Taking This Class

I knew at this time I had Lymphedema in my legs and it accounted for a good portion of my weight.  However, my abdomen was growing in size as was my upper arms and I couldn’t explain it.  I started to feel more lumps under my skin, especially in my upper leg and thigh area, most them painful to touch or pressure.  Pain levels kept rising making mobility more difficult.  Now I was lucky I could walk out to my porch or even take a car ride, usually to the doctor’s office for cortisone injections in both my knees to quiet the pain of severe osteoarthritis.  At times it felt like I was on a runaway train and had no control of how my body was evolving!

I had been told back in 2001 about how Lymphedema affects the body from my physical therapist but it didn’t explain the growing pain levels, bruising and all the lumps under my skin.  It was time to make Google my new best friend!  After searching and following oodles of trails on the Internet I came across a couple articles on something called Lipedema.  I looked at the body shapes, signs and symptoms and knew I had found my missing link.  How did I get this disease?  No one in my family had this.  Did I do something earlier in life to bring this on?  Was I not taking good enough care of my Lymphedema that led to the development of Lipedema?

After days of reading and analyzing I finally figured out that the Lipedema came first and caused the Lymphedema to form due to the fat cluster impacting the lymphatic system.  By this time I was already at Stage 4 with Lipo-Lymphedema.  I had read that 11% of women are affected by Lipedema.  At 11%, and realistically it’s probably a higher percentage, I knew this isn’t a rare disease, it’s just rarely diagnosed!  All my health providers did not know anything about Lipedema, fat diseases or lymphatic disorders.  This is a trying situation as getting treatment requires a diagnosis.  If no one is able to properly diagnose you (and not as general obesity) how can you get the necessary treatment?

Need to be Your Own Advocate

You will need to be your own advocate for diagnosing and getting the proper treatment for your disease(s)! You will find most doctors have not had adequate training on fat and lymphatic disorders to help you.  If you have read the documentation on Lipedema and Lymphedema and strongly believe you match the signs and symptoms, you will need talk to your doctor about how you believe your body presents with Lipedema.  Bring a handout of the signs and symptoms or the book “Lipedema – The Disease They Call Fat: A Clinician’s Overview” for your doctor’s education.  There are also several good resources on our Resources page where you can find great information on talking to your doctor.

Here’s a great tip:

If your doctor refuses to consult educational material or a consider a diagnosis of Lipedema or Lipo-Lymphedema – find a new doctor!  You need a doctor who either knows about these diseases or is willing to learn from you (after doing your due diligence). Do not allow yourself to be dismissed as just being obese or required to do bariatric weight loss surgery first before considering a legitimate diagnosis of Lipedema or Lipo-Lymphedema.

I am fat.  Chanced are you are fat too.  However, there is more than our fat at stake here.  Without a proper diagnosis and treatment plan your condition will only progress.  If you are lucky enough to catch Lipedema in the early stages you can effectively manage it and preserve a good quality of life for yourself.  However, if you reach Stage 4 – Lipo-Lymphedema you will need immediate and aggressive treatment to reduce the Lyphedema and manage the Lipedema.  Your alternative is a severely diminished quality of life with lots of pain, mobility or immobility issues, social isolation, depression, anxiety and a dependence on family members and friends to help care for you.

None of this is your fault (unless you have a Lipedema diagnosis and choose to do nothing about it, which is crazy knowing what’s ahead)!  I am a beautiful, well educated, loving, caring, talented, self-sacrificing mother of two wonderful girls that just happened to inherit/develop a set of really debilitating diseases.  I bet you closely fit this description too,  Don’t let these diseases make you feel less of a woman or person.  You’re worth is not determined by your amount of fat!

These diseases make us fight harder for our right to a proper Lipedema and/or Lymphedema diagnosis and a treatment plan that can help us preserve and even improve our quality of life. We deserve that! Don’t shame us for our body type or make us feel less deserving of treatment just because you can’t understand our condition. Educate yourself and learn with me so we can partner for our best health and treatment options. Become part of the Lipedema network that focuses on advocacy and research so one day we might have a cure!

If you are here seeking answers you have begun the process of advocating for yourself.  There are 17 million women in the United States and millions more around the world who are screaming for answers.  I hope you can find some answers here and with Lipedema partners worldwide who want the best outcome for you too.  Meet us on social media or in person support groups to gain the knowledge and power to advocate for yourself.  You are strong and not alone in this advocacy and education effort!

To your improved health, education and advocacy!