I wanted to take the opportunity to introduce myself. My name is Heather, I am 38, I live in a little cottage in rural New Zealand with my hubby and my 2 year old son Ace. In January of this year, I made a vow that I would weigh 70 kg by the time I was 40. This was it, I was determined, if I didn't stop being a “fatty” now, I never would. I made the most intense effort of my life to move this mountain. The first two weeks – I lost 4 kg, on a super carb restricted diet. the next two weeks, while maintaining my strict diet, I gained 4kg back, and my legs started to get more padded and swell around my knees, two weeks after that I had not only gained back what I had originally lost but I had gained another 6 – yes 6kg in two weeks. I was still maintaining my strict diet to the zenith. I was devastated. I was sinking into a giant fat suit, and everything I had learned about weight loss over the previous 30 years of dieting, no longer worked. To try and combat the pervading depression that was accompanying this weight gain, I started looking at body positive websites and following plus size bloggers to try and find a way to still value myself despite being the fattest person I personally knew.
It was while reading one of these blogger pages – I noticed that someone had posted about Lipedema, and had given a link to a video preview of a documentary called The Disease They Call Fat. – Lipedema. I started to research Lipedema. I googled pictures of what Lipedema legs looked like. I saw my legs. I saw women with legs like mine. I saw women with legs like the 16 year old me, and the 24 year old me, and the 38 year old me. I was in shock. I was afraid. I was excited. I had a tiny flicker of hope rising behind the self talk that was saying “you're just looking for another excuse to explain your lazy, fat, ugly, product of lack of self control body. (Wowsers, society really did a number on me – brain washed me into hating myself – society is really really like living with a mentally abusive partner)
In my heart of heart, I have always known in a small way, in a tiny way that this couldn't be my fault. I know what I put in my mouth, I know the attempts I have made to be active in spite of high pain levels. I know how much self control I had exercised to almost always make good choices at parties, in social situations, even on my own in my own house where no one would ever know if I didn't stick to my diet- I stuck to it, because I actually have very good self control. I gave up alcohol because I “couldn't afford the calories.” I gave up carbs because my body hated me for eating them. BUT pictures don't lie, do they? How can you have a body like mine and not be abusing food and avoiding exercise???
I was afraid to take the next step and try and pursue finding a doctor who would listen to me, and work with me to make a proactive plan to manage this condition. I had white coat anxiety, and I had been badly treated by doctors and medical professionals. I had experienced fat bias in almost every situation that involved medicine. Just adjust your diet and exercise more. Any pain or problem I presented was labelled as a symptom of being obese.
I contacted a clinic that I had seen that specialized in environmental health and also was open to womens' medicine to do with female hormones etc (also a tabu and quashed area of medicine in New Zealand) I made an appointment with a female doctor there. I then requested her email address and I forwarded some information about lipedema, some links to good pages, and a cover letter that explained that I was looking for a medical practitioner that would actually work with me to try and be pro active about this condition I had basically self diagnosed. I also explained how I had been met with many many ignorant arrogant doctors in the past, that had refused to listen to me, and that if she planned to take the same course in dealing with me, to let me know so I could cancel my appointment and save us both some time and heartache.
I received no response, so I decide to just go anyway. I had booked a double appointment to allow time to discuss and allow for a physical examination. Looking back, this was really the first time I have every been so assertive and really been prepared to advocate for myself. The appointment went well, the doc had read the information I had sent, had viewed the pics of the legs I had posted links to, and took the time to look at and examine the fat deposits on my arms, buttocks, hips, thighs, knees and ankles. She concurred – I have Lipedema. She also promised that she would look into possible treatments available. I received a letter from her the following week, saying while further researching she was even more convinced with the validity of her diagnosis, but was sad to say she was unable to find any real treatments that were available here in New Zealand. I have since been following Catherine Seo's Lipedema Project closely, and was recently appointed as one of her social media interns and more recently as The Lipedema Project's New Zealand ambassador. I am researching and networking and advocating about Lipedema almost every day. I am using what i had until recently considered a ruined grotesque body, for the promotion of awareness for this horrible painful imprisoning condition. It's a role I could not as effectively take on without this body, as a walking talking living model of type 4, stage 3 Lipedema.
Every time I see a new doctor or medical practitioner, I am further impassioned towards helping set up advocacy for Lipedema sufferers in New Zealand, and in fact worldwide. It is NEVER acceptable to fat shame, show fat bias, belittle or fob off patients presenting with Lipedema, as fat lazy slobs who are non compliant to medically prescribed diet and exercise regimes, just because they are not able to lose weight.