Oh, so you googled it....

During a recent medical appointment, a seemingly throw away comment made by my practitioner regarding how I discovered I might have Lipedema, exposed a dark spot in the current culture in the medical profession.  While I explained there is a lot of good information available on the internet, he responded dismissively …. “Oh, so you googled it then”

That comment then triggered a memory of seeing a post from a doctor friend of mine of a picture of a coffee mug that said:

“Please do not confuse your Google search with my medical degree.”

Actually I didn’t “google it”. Yes I discovered there was such a thing as Lipedema through the internet – but not in the way he was insinuating.  I didn’t just google my symptoms and then decide I knew better than the entire medical profession. Even if I had – I have 39 years of experience regarding my symptoms, conditions, bodily functions – 15 minutes and 3-4 questions don’t make you an expert on me – regardless of your degree.

 (I got the above image from a fabulous blog post from badlymeattitude.com - you can read the full article HERE )

I was running out of options after 34 years of attempting every diet on the planet and exercising regularly despite being in extraordinary pain when doing so. Still – no – weight loss. In fact I was gaining rapidly, without having a lifestyle or eating habits that supported such gains.  I thought I was losing my mind – and I was spiralling into depression and self-loathing. I was trying to engage through the online community of body positive bloggers – searching for some way of still finding some sense of value – despite being the antithesis of what society regards as valuable. On a plus size blog I found a link to a movie – a documentary by a lady called Catherine Seo. It was called The Disease They Call Fat – Lipedema. When I watched it – wow, did it resonate with me – and there were a whole bunch of women interviewed in the documentary that were battling the same weight gain in specific area issues as me. I had an answer. It is with this knowledge that I contacted a new GP and asked if they were willing to work with me to try and get a handle on this condition that was ruining my quality of life. Thankfully there are some open minded doctors out there – and we were able to make some progress with diagnosis and start heading towards becoming equipped with self help tools to manage my condition personally regardless of how little help is offered through the public medical system.

It’s ironic that medical professionals frown upon Lipedema patients’ googling their condition – when most Lipedema patients would be over the moon if anyone one treating them would take the time to google it. The information is there – it’s backed by experienced, well respected doctors. Lots of the information is free and there is specialized courses available to medical practitioners that cover Lipedema, from a bio medical perspective.  I don’t believe that doctors and specialists now have the luxury of brushing off Lipedema sufferers, because the condition is rare. Every day, more and more credible information is available about the condition.  It’s fair to say that the persistant ignorance within the medical profession regarding Lipedema is now a matter of choice, rather than a lack of available credible information.

Here is a good place to start Lipedema Education

The Diagnosis

When I pulled up outside the doc's office, my heart was beating and I felt shaky. All my past experiences with doctors offices, bar one, had been bad. Was this one going to be any different? 
I had precursed my visit with an email full of information, I had booked a double appointment, I had written a letter to the doc, letting them know what I thought I had, how sure I was that I had it, how bad my past doc experiences had been and stated bluntly that if they felt they were not interested in hearing me out and trying to work with me on it, to let me know in advance of my appointment so I could cancel it, and add their names to a long list of unhelpful GPs.

When my name got called up, I went in, and at first I had the flusters. I explained that it was white coat anxiety and to bear with me. She had read the information, and no, she had not seen or heard of Lipedema before I sent her the information. I gave her some background, and we commenced the examination. With Lipedema there is no basic/simple/cheap blood test or scan you can do, a diagnosis has to be made by manual examination and sight and doctors' lack of knowledge and experience with Lipedema means its hardly recognised in the medical field. HOWEVER, due to current work by some RAD (Rare Adipose Disease) doctors like Karen L Herbst, that is beginning to change, and in some small tiny way, I am excited to be part of that shift.

After the examination, the Doc agreed, based on the research she had done prior to my arrival and on having seen and examined my legs and upper arms. She agreed. A medical doctor had listened, researched, taken the time to examine me and concurred I did indeed have Lipedema...........

A huge wave of relief flooded over me, a massive sense of validation, for the first time in my life a doctor had partnered with me to help me find a diagnosis of something I had known wasn't right or normal for most of my life. 

BUT THEN IT HIT ME....
Oh my frickin gosh, I have Lipedema, I have it for life, it's only going to get worse and there is very little I can do about it.... I was sentenced from birth to be a LADY IN A FAT SUIT, literally imprisoned, held captive, a thin person encapsulated in fat suit that I can NEVER TAKE OFF. 
I didn't get here by overeating, by lack of activity, by any fault of my own. Yet, I will live with the consequences of those who have - until I die....... 

I mean I KNOW it's not cancer, but the realities of being trapped in a body that weighs 159kg (350 pounds) and not have the option to change that, is not fun, easy or pleasant in any way shape or form. 

So what is Lipedema exactly.... Wikipedia has this to say...

Lipedema or lipoedema is a chronic disorder of adipose tissue generally affecting the legs, which causes the legs and sometimes the arms to accumulate fatty tissue.^[1] It is distinguishable by six characteristics:

1. it can be inherited;
2. it occurs almost exclusively in women;
3. it can occur in women of all sizes, from the seriously underweight to the morbidly obese;
4. it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles;
5. unlike normal fat, lipedematous fat generally cannot be lost through diet and exercise;
6. a pathognomonic indicator of lipedema is that the feet are spared.

Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery, i.e., surgery of the uterus, ovaries, or fallopian tubes or any surgery with general anesthesia. Lipedema can also be triggered by an extremely stressful situation such as a death in the family or a divorce because cortisol levels increase, causing an inflammation cascade, almost always misdiagnosed as simple weight gain. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedematous fat cells and to alert patients to their heightened risk factors so they can take appropriate action.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-pubertal female population, with estimates of 17 million women in the US, and 370 million women worldwide affected

Here is my Facebook announcement:

I got an official diagnosis today. I have Lipoedema. I am both horrified and relieved at the same time.  WOW. 

Lipoedema is a fat disorder that is often mistaken for simple obesity, but unlike obesity, it is not caused by bad eating habits or lack of exercise - in fact Lipoedema DOES NOT respond to diet and exercise AT ALL. In a nutshell, the reason why I am fat, unable to get thinner and may well get fatter is COMPLETELY out of my hands. This is a genetic condition. It is also known as the painful fat syndrome - which is why I am in pain a lot and have mobility issues. That sucks. 

It's taken 33 years of beating myself up and putting myself through hell trying to lose weight to get to this point. I have had so many suggestions, insinuations and some direct insults directed at me by "friends" family and health professionals about my weight and my failure to reduce it; so many wasted years and so much energy gone into something I was never going to be able to achieve. I am fat - and that is NEVER going to change :(  That said, I have the rest of my life to live - sure I am fat, but It's not my fault and if anyone wants to pay me out for that they can kiss my extra large derriere.  

On the plus side (excuse the pun) because I have tried so hard to have a healthy lifestyle for so long with the hope of losing weight (which obviously never happened) - I am extremely healthy and do have any of the negative health issues I would have if my fat were caused by obesity - my heart, cholesterol levels and blood pressure are all in the healthy zone and I am not diabetic or even pre diabetic.

In time my size may increase, and my mobility may reduce, so from now on I am going to start doing some of the things I was going to put off till I lost "the weight" my first goal is to walk the Karangahaki Gorge walk. Hello, new life.