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.

It's not always a triumph... sometimes it's just awful.

Last week I blogged about geeing up to go for a swim. 
My post was positive, proactive and enthusiastic. 
My swim was not.

Knowing that I was going to experience some negative feelings - (exposing my dercum's and lipedema affected body in public for the first time in many years can cause a few freak outs) I invited one of my closest friends and my darling sister in law who is also one of my closest friends, as support people. 
When I got there, I could feel the panic rising. The facility was awesome, warm therapy pool, ramp not stairs, but the anticipation of having to take my dress off and walk into the pool in my swimming costume... OMFG it was terrifying. 

No one around me made fun of me or made nasty comments - but my mind had a melt down and I felt so sad that at some point I had learned to hate my body. I just sobbed and backed away from the pool. 

My bestie followed me into the toilet, while I stood at the mirror and bawled my eyes out like a big baby. 

The logical part of my brain was screaming - it's a piece of fabric - weather you take your dress off or not - you're still fat underneath - why are you freaking out? Just get in the pool.

The emotional side of me was screaming - yes but I am deformed and grotesque, and my dress is the thin veil that conceals that from the greater world, from eyes that I did not invite to see me, eyes that don't know my back story, or how hard I have battled this. 

My sis in law, took the next support shift, and she walked me through the entrance to the pool, and helped me to get my dress off and put my glasses away for me. I was in. I was still sobbing. I was still feeling every self loathing feeling I have ever felt. 

I headed towards the therapy pool, still sobbing and feeling angry, so angry, all the feelings of self anger and punishment surfaced in me. I was horrified to realize so much of the pain and punishment that I have experienced over my life was self administered - not self instigated - but performed by myself. I was shocked to finally understand at some point someone had programmed my brain with their comments and directions to whip myself because of my "fatness" 

That is so sad and so sick. 

When I finished my pool exercises - I didnt feel triumphant, I didnt feel like a champion. I felt like a fat broken cry baby. I fell like a giant wet disgusting blubber chunk.

Then the next wave of discomfort set in. 

It clicked in my brain that now I have done this once, I have to continue to do it. 3 times a week.  Relive the self loathing 3 times a week.

Any pleasure I felt - physically, with the water massaging my body, and the free and near weightless movement while I was in the pool was blotted out by my emotional anguish. I had to put on a fake happy face for my son. 

How do I feel about my next swim in two days time? I am refusing to think about it. It hurts too much. 

Lady in a fat suit - in a swim suit.......

I did it, I put on a swim suit .... It's black, my thighs are white. 
It has a wee skirt that is supposed to help you feel more confident about your thunder thighs.... the skirt is too short to help much, other than to provide a distraction from the discomfort of being so exposed, by requiring me to tug at it, every other step. (my butt likes to work clothing items up to my waist).

The thing is, I am wearing it. I put this swimsuit on instead of underwear today - threw a dress over the top- it's a pain in the arse when I need to go to the toilet... but that's incentive to go to the pool... take my first swim in the last 10 years, in a public pool.  

Why? 

Why now? Why expose the poor unsuspecting public to my precious but disfigured body? 

Because it will help me. Yup, I am doing this for entirely selfish reasons. 
I want to help my body to heal, to work as well as it can under the circumstances. 
I am doing it so that when I go back to my physio appointment I can say I have done it. That I have added to my "not fat because I am lazy" dossier. 
I am doing it because I don't deserve to be ashamed of my body. 
I am doing it because the resources are there in my community, for me to use. Peer pressure, social media and the diet industry has no right to psychologically bar my access to it.

So today, like a normal person, I will take a swim in a public pool! My body will feel the benefits of being near weightless in the water, the gentle massage of the water,  the boost to my lymphatic flow.

Girl is gonna get her swim on!  

There are 5 types of Lipedema

When I first discovered that I had Lipedema, I was trying to explain it to a friend. They looked it up and then questioned me because they had read that "Lipedema means you have big legs" - and they had observed that "you're kind of big all over" 

There are 5 Types of Lipedema - I have type 4. 

See all 5 types HERE

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. 

The Lipedema Project

Soooo exciting things are happening for me with The Lipedema Project! I have just gained an internship with The Lipedema Project! This means I will be able to help spread the word about Lipedema but also have access to some great resources and will be able to keep up to date with everything that is happening overseas with Lipedema.

I am in New Zealand, other than my doctor, I don't know any other medical professional that knows of Lipedema or would consider diagnosing it. It is very isolating, and I can't help think that if I feel isolated that others with this disease, diagnosed or not, will be feeling alone too. 
I want there to be resources available right here in New Zealand. I want a New Zealand support group. I want our doctors to be informed and have Lipedema acknowledged in New Zealand, as a disease that affects mobility and quality of life. 

There is an amazing documentary called The Disease They Call Fat by Catherine Seo that is now available on pre order through Lipedema Simplified webpage.

 Buy one, watch it, share it and buy one for your medical practitioner. If you get one now you get a discount and an even bigger discount if you buy two. (one for you and one for your doctor) here is the link for the discount