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!  

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. 

My confronting self

Today I went to play music with my band Hot Diggity, we're the only all female bluegrass band in New Zealand, and we do pretty well. 

The venue was the vintage markets in beautiful Matakana, and it was sponsored by a pretty awesome New Zealand magazine called Glory Days. We had a great time, I felt good singing, I did well, people stopped and stared and listened when they heard us, some stayed for nearly two hours. 

I had taken pain medication so my pain levels were manageable, I was wearing a retro frock, I even had my hair done with victory rolls at the on site beauty parlour, as it was a vintage event and then I lined up with the four other lovely ladies (also frocked up) in my group and enjoyed the applause and great comments . It was a delicious feeling.

Then I saw the photos, on the computor, on Facebook. 
Even when I feel good, I look odd. I look exactly as one would expect a lady in a fat suit to look.... Fat. Not a little bit chubby, really FAT. 

I am finding it really hard to accept myself, I am struggling with the idea, it's never going away. I make progress and I tell myself why I am worthwhile and worthy, and then I see photographs of how the world sees me and I am horrified.

 I feel so disconnected from my body, I don't feel the way I look, and yet there it is... no amount of make up or hairspray, or jewellery or flattering clothing will ever conceal it.... so what now....... *crickets* ........

How do I get past this? I can't explain it to everyone who sees me... even if I handed out fliers and educated the world as to why I look like I do..... I still can't stand to look at myself. Lipedema has disfigured my body and trashed my self confidence. I don't know how to get through this, I don't know how to escape from hating how I look and feeling powerless to change it. ..... I will think on it, and get back to you.

Taking charge - trying to be as pro active as possible in managing my conditions

One thing I have discovered, is how hard it is to change your mindset regarding investing in yourself. Recently I have been looking at options regarding getting the best care and working out the best management plan for chronic pain, Lipedema and the mobility issues that come with it, and Dercum's Disease. 
An opportunity has become available to go and have an appointment with one of the worlds leading specialists in Rare Adipose Disorders Karen L Herbst. She will be visiting Melbourne, Australia from the US, in October of this year to see patients and be part of a mini conference. I would love to get an appointment. To do so it will cost me about $3,000 in air fares, accommodation, and conference costs.  
What I am struggling with is the head shift that is required to allow myself to spend that much money on myself. To clarify why, if you consider that for the last 30 years all I have ever heard about improving my health has revolved around "If you would just exercise more and eat less, all your health problems will go away" and "If you're not losing weight  you're not trying hard enough with your diet and exercise - you lack will power and commitment" Now with a diagnosis that finally confirms this permanent fat suit is not my fault I am supposed to be able to just find a way to stop the guilt and in adequacy and self hate and stop punishing myself for not being able to be thin.... its not as easy as it sounds. 
Where do I find the courage and desire to invest in myself?? Where do I find the courage to ask for help? How do I learn to trust people with my physical problems when I have been vulnerable to so much judgement for so long?
I realized I had been fighting the inner voice that kept saying, "you will probably end up not being able to walk or take care of yourself because you don't deserve help. You're just a fat pig." 
Without this Lipedema diagnosis, a large part of society would be saying this to me, not just my inner voice. 
So how do I learn to love myself enough to invest in myself, when I have been taught to hate myself for most of my life. My body will always be outside of societies norm, from an asthetic perspective I am disfigured for life. How does one find self worth without a physical body that looks normal? In a world that places so much emphasis on looks? 

Every time I have to pick the most sturdy piece of furniture to sit on or sleep on for fear of breaking it. Every time I have to be cautious in using peoples toilets, in case I break their toilet seat, every time I have to excuse myself from fun activities because I am too heavy to participate, I love myself a little less. How can I change this? If I am every going to be able to do what I need to do to be as mobile and healthy as possible - I have to find a way to stop saying to myself - you deserve to die and find a reason, from somewhere to convince myself that I deserve to live.