Lilith Fury

Horror actress, disabled plus size model, and body positivity activist

Lipedema diagnosis. Thank you kindly for your donation towards my surgery

Background

I am a gay, disabled, plus size indigenous and Latinx model, and actress. I got into horror at an early age because my family were brujas, we lived in a former funeral home, and horror movies were always in abundance. I was obsessed with all things spooky. That obsession has only grown.  Once I became an adult, I wanted to be as close to my favourite genre as possible, so to me, that meant getting into acting. I knew it didn’t matter if I had any lines or not because that wasn’t the point. The point was to be part of something magic.

Now that I’m fat,  I actually do want more prominent roles because I think there needs to be some representation. There are so many fat male actors, but almost no fat women or women presenting actors. Think of every fat man that is successful in TV, movies, or music. Think about their size. Now think about fat women. How big are they allowed to be? We’re told they’re fat, but they aren’t. Not really.

I want to change that.

Advocacy

There is so much bad in the world, and it feels hopeless at times. I think a lot of people are so overwhelmed by it, that they think they can’t make a difference, and so they either don’t try to fight it, or they become part of the darkness.

I want to do the opposite. I want to make things better having existed in this world. I think that is the meaning of life. To have done something to make the world a little bit better just by having you in it, then not having you at all.

I want to help make things more accessible.  I want to help fight for a positive change.  LGBTQA+ rights, disability rights, fat liberation, inter sectional feminism, income inequality, etc.

Dealing with criticism

There are always going to be people that don’t like you, just because of the way you look.

But their opinions don’t matter.

Think of it this way . . .  people who hate you because of your size, race, ethnicity, disability, orientation, etc, have a certain weakness. Their hatred is like an addiction. It is some all-consuming force infiltrates every aspect of their life. Some go so far as to seek us out, follow our social media, search our hashtags, check our friends list, create special groups and forums, go to certain websites, and obsess about us, and how much they hate us. They talk to others like them, seeking approval for their hatred as they all make assumptions on what we eat, whether or not we are happy in our lives, questions of our health, and staying up to date like they are paparazzi. 

They want us to know how much they disapprove of us, because nothing angers them more than seeing us happy, or having us succeed.

So . . . that means that we have the power to completely ruin their day just by existing. Why would the opinion of someone like that matter to you? Someone whose entire day can be ruined at the mere sight of someone they don’t find attractive. That’s hilariously pathetic. They have no power. 

Lipedema, its effects, and my upcoming surgeries

I’m one of those people who unfortunately have the majority of symptoms. Extreme pain, nausea, tachycardia, swelling, weakened immune system, easy bruising, easy dislocation, hypermobility, brain fog, and the list goes on and on and on. 

My Lipedema first appeared at the onset of puberty, but it wasn’t that bad. My legs are little bit bigger than other kids my age, aside from that it wasn’t too noticeable. I had a little bit more growth after I had my son, but it was still pretty mild.

But . . . when my daughter was stillborn in 2016, the hormonal change sent my condition into overdrive and everything progressed rapidly. 

I am in pain all the time, and I feel like my life was taken from me.

The past few years there are so many things that I wanted to be able to do but couldn’t, because of my condition. 

I just want my life back.

My upcoming surgery will be the biggest one in a series of about 6-8.

This one they will be removing the Lipedema nodules from my stomach. My doctor believes that Lipedema has become so extreme there, that it has replaced all actual fat in the region, so I could either end up having only a few nodules removed . . .or having my entire abdomen cut off.

Once that is removed, the pressure and build up in my lower extremities should be relieved, shrink somewhat, and the progression should slow down.

They think that my stomach is actually causing the diseased tissue in my legs, hips, but, et cetera to get worse. So I really want the surgery to hurry up and be done so that I can start to get better, even though I know I am going to more than likely look pretty weird. 

Going public about my lipedema diagnosis

I have had over a dozen people come to me, and let me know that they have been diagnosed with Lipedema thanks to my posts.  There are several more who have appointments scheduled to speak with doctors in order to hopefully get their diagnosis. It makes me feel incredibly happy knowing that so many people who had been gaslit by doctors, and everyone else in their lives for so many years, are finally able to find out what is wrong. Now they can finally begin to be able to work on treating it. 

Source of self-confidence and determination

With me it started when I was doing web modelling. When I realised that even though I had gained weight and become what I thought was the epitome of undesirable, there were still hundreds of thousands of people who thought I was perfect.

And it helped me understand that no matter how you look, there will always be people who think you’re beautiful, and always people who think that you’re not and that trying to fit into the ideals of others was just a waste of my life.

I didn’t respect any of them, and couldn’t justify putting any value to their opinions on my looks. 

I just one day realised that I didn’t care what anyone had to say about how I looked. Once that happened, it was the most amazing feeling in the world. It was true freedom. 

Importance of having representation from people with disabilities and different body types in the media

When I was growing up, the common consensus was “thinner is better”. I literally started starving myself in first grade, and developing an eating disorder because everywhere I looked, I was told that the only way you could be beautiful is if you are thin. If there had been plus size models, and fat women being represented in a positive fashion well I was growing up, treated like actual people, and not like a cautionary tale, or something to be feared/pitied, then I might have been able to have had an actual childhood, and teen years.

So much of my life was wasted, thrown away, and ruined because of this lack of representation. I know that I didn’t think I could be pretty, until I was in 5th grade and saw a Native American Barbie doll. Looking at its long black hair, tanned skin, dark brown eyes . . . it was the first time I saw a doll that looked like me. (I was darker then than I am now). I still thought I had to be thin, but the first time I thought I had at least a chance at being beautiful because of that doll. 

Read more about Lilith Fury.