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

Mind Reading....

I recently was chatting to an occupational therapist about living with Lipedema and Dercums and how I feel about being in public and she observed that I do a lot of "mind reading"

"Mind reading" is  making assumptions about other people’s thoughts, feelings and behaviours without checking the evidence.

I could see what the therapist meant, I mean, I do mind read. When I eat in public, I assume people are thinking "omg check out the big fatty, stuffing her face again" So I make sure everything I eat in public involves salad. 

So why do I mind read this way? 

Simple really - I have experience. 

I have seen all the memes and photos on the internet mocking fat people eating. Google it - they are everywhere. 

I have also had people comment to me directly about what I am eating in public. 

I have also heard people telling stories to their friends about fat people they have observed "filling their faces" 

So am I "mind reading", or have I just learned that it's most likely that people observing a fat person eat will think negatively of them.

My negative experiences with people thinking negatively about fat people eating in public, or in general for that matter, has definitely modified my thought process, confidence and pressure to conform to expectations.  Fat people are expected to live a life of restriction, punishment and accountability to everyone.  There is a good chance people are judging me negatively full stop. In my country, New Zealand, it is legal to discriminate against fat people.
Here is a quote from a recent article from the blog called Friend of Marilyn. 

"It is legal to discriminate against me in Aotearoa New Zealand. Even though research clearly demonstrates that fat people are discriminated against in educational, employment, and housing, settings, New Zealand hasn’t legislated to make it illegal. In fact, very few places around the world have provided protection for individuals from facing discrimination based on their size." Cat from Friend of Marilyn. 

You can read the full post Here

Does this just happen to fat people? Nope, I have a friend who is living with chronic fatigue syndrome. She mind reads that people think she is lazy. How did she start mind reading that reaction from people? Someone planted the seed in her brain that people think that of her, she may have heard negative comments about others with chronic fatigue syndrome and so she mind reads people - believing that they think her lazy without proof they do. 

So what to do about it.... 

Honestly, I am not in a place in my life that I feel strong enough to take on the world and challenge stigmas and crusade for change. 
Maybe in the future when I have come to terms with what I am going through, maybe when I learn to love myself again. 
In the mean time, what I can do is start taking notice of when I am mind reading. Start considering how much of my mind reading is based, in fact. 
Weigh up, how much mind reading shapes my behavior and if said behaviours are positive or negative. 
Start testing what would happen if I challenged a mind reading behaviour. Let's use my eating in public example. 
I plan on doing a couple of experiments in the future to see if I can change my thought processes around that. 

Regardless, it feels good to acknowledge that some of the mind reading going on in my life, will be based on fact. Now how to get to a place where I don't care what others think, that way, no matter what I mind read - it will effect my behavior in a negative way less and less. It's all about trying to live in an authentic way, it's about being in the moment, it's about finding out what makes me happy.

Early diagnosis is so essential

Today I stumbled across a YouTube video, that tells Silke B's Lipedema story. 
Silke, was diagnosed in her 20's and has pursued 10 years of compression stockings and manual lymphatic drainage massage  3 times a week. Even with these helps, she is now considering looking into a special kind of Liposuction procedure that has least negitave impact on the lymphatic system. The procedure needs to be done by a surgeon that is familiar with Lipedema and will use WAL or tumescent techniques. Dr Stutz of Germany is the most experienced surgeon in these techniques but increased awareness of Lipedema means that more and more surgeons are doing the procedure. 

I am happy for Silke, that she has that option - even though her governments health system does not cover the operation. (that needs to change too)
I am, however, so, so sorry for myself, that I was never diagnosed in time to even pursue the stockings and massage option. I am a lady trapped in a fat suit, that I never created and that I cannot escape from. 
I enjoyed watching Silke story, and I think you should watch it too. Silke.B's Story 

Apart from sad, about my own story, I feel even more impassioned to pursue being involved in putting advocacy packs in place for people wanting diagnosis, it needs to be diagnosed at stage one, to avoid the stage 3 and 4 that I am living with now. No one deserves to live like this when they are only a diagnosis away from halting the onset of this horrible disease - The Disease They Call Fat- Lipedema.