A while ago I was interviewed for an article about being fired from a job because of my weight (it was NEVER published, but that’s another story and note to self you’re an excellent writer you don’t need others to tell your story). In the interview I explained how that experience was a pivotal moment in my life and the reason I became a member of the Obesity Action Coalition. The author sent me a draft to fact check (yes it was that close to completion and nada), and had written that because of the experience I am now a fat activist. I asked her to change fat activist to obesity advocate. She responded a bit confused.

So you advocate for obesity?

I explained I advocate for individuals affected and living with obesity. Why is that confusing? Sorry, not sorry, but I have never identified with being a fat activist, while I do in fact support the work of the fat acceptance movement, my focus has always been different and I’ve never been welcomed within the community.

I’ve got some real honest to God battles to fight, I don’t have time for the cosmetic ones. – Admiral Fiztwallace, The West Wing

For those who do, great! There is a lot of work to be done, and there is room for everyone. What is disappointing is being shut out of conversations about fat acceptance because of those differences instead of coming together by our shared goals.

Body positive? I’m positive my body is slowing robbing me of my quality of life.

Tomayto Tomahto I say obesity, you say fat. (I actually say fat too, see the name of my blog) However, there is no reason to call the whole thing off.

In my work as a lymphedema and lipedema advocate I advocate for many people not like me, my lymphedema is secondary to lipedema. However, I advocate for ALL lymphedema patients, those with primary lymphedema, those with secondary lymphedema due to cancer treatment, young and old, male and female, upper and lower extremities. There are often debates about which lymphedema treatment is most effective, pumps vs MLD, or new surgical options. I say ALL treatment needs to be covered by insurance so patients can make the best treatment options for themselves.

I approach obesity advocacy the same way. No matter the cause of the obesity, every individual deserves to live a life free of bias. They deserve bias free access to employment, education, and healthcare. The three aspects of life I believe are vital to overall health: physical, emotional, mental.

I believe healthcare is a personal matter, a person has the right to decide if and when they seek treatment. No one should have any treatment forced upon them, nor should anyone be shamed for opting to pursue treatment.

But that is what is happening.

I understand if YOU do not want to be labeled a disease, or a disability. But for some of us, especially those of us with advanced stage lipedema aka lipo-lymphedema, that is our reality so please don’t take our label away.

Please do not tell us how to self-identify. That is the opposite of acceptance.

And please do not belittle and attempt to shame us for succumbing to society’s pressure of what an ideal body should look like. Or scold us for using “bad words”.

We are talking medical terms here, and we are fighting for our lives.  We could use some allies.

We are not worried about being able to find the latest fashion in our size, we are too concerned about finding underwear and shoes to fit our extremely large and misshaped legs and feet. I don’t show my arms because I’m brave, I show my arms because few shirts with sleeves fit over them.

We worry about losing our mobility, and it’s not that there is any wrong with needing a wheelchair or mobility scooter but often those that can support our weight are wider than ADA requires for doors. Our issues, like our weight, are beyond what most people can even imagine and thus we feel as if we are being forgotten.

And like the rest of you, we are awesome people. We’re smart, educated, work and/or volunteer…we have a life worth living and worth fighting for.

Most of us are relatively healthy, but the medical conditions we do have are worsened by lack of access to care due to weight restriction on equipment or the bias we face from healthcare professionals.

Wanting to change our bodies does not mean we hate ourselves, quite the opposite, we care about ourselves and our health and we need awareness of our condition. We need to reach those who are suffering without a diagnosis, and we need to be a part of treatment options being developed.

We need people to care, and if we cannot find that alliance within the fat acceptance movement then where else do we turn?