Invisible Not Broken - Chronic Illness Podcast Network

Trigger Warning: Sexual abuse, self harm, and eating disorders.

If you need help : NEDA

Thank you to Bulimia Center who had a wonderful resource page. If you have other help lines please comment below so we can add them in our resources.

Website: https://aegaeta.wixsite.com/website

Twitter: @GaetaAmy

Disorder Info

What is your disorder? *

Multiple disorders (physical and mental), but I'd like to focus on my history of eating disorders, mainly anorexia

At what age did your disorder become a daily issue? *

15

Who were you before your illness became debilitating? *

I can't remember too much. I've had a bad relationship with my body image and food since I was 8. I always wanted to be incredibility intelligent and loved school. I was also pretty socially sheltered, never being actively exposed too much cultural difference or differing opinions of beauty or health from the norms. At age 15, I knew I was developing anorexia. Before 15, I was largely carefree, less anxious and would eat without thought. Often eating until I was overly full. I never looked at body much because I was and still am, very very skinny. But, at 15, I started to develop and thought my childhood had ended. Now, I told myself, I have to be an adult and "take care of my body."

What would you do if you were not dealing with your invisible illness? *

This is incredibility hard to answer, emotionally hard. I blame my eating disorder for so much-- mainly, it is difficult for me to develop committed relationships (friendship and romantic). As a result, few friends have lasted long and my love life always falls apart-- many see my needs as a burden even though I am in a much better place with my ED.

What would you like people to know about your daily life? *

My daily life is timed and organized around eating. To prevent weight loss, I have a very set mental schedule of when I should eat, how much, and what. I need structure and disrupting this structure causes so much anxiety. So, any alternative meals (like a sit down dinner at a friend's house) must be planned in advance. I am also always aware of how skinny I look more or less. I am a small person and I don't care about anyone else' body size/shape beside my own. That is so say, I want to fight against the idea that EDs, especially anorexia, make people hate fat people or whatnot. It's not like that at all for me.

What would make living and moving in the world easier for you? *

If I could tell people my eating habits/ needs without them shaming, questioning me, or getting angry. If I say, "I don't eat bread," for example, do not reply "omg i would die without bread!" or "why, why don’t you eat it?" or "omg Amy, you are not fat, eat some bread." Just say "Okay, do you want something else?" I also like to eat the same foods, and people get upset about this-- criticizing me for not being more "adventurous."

Do you have any life hacks? *

So many. Google every menu, always pack snack bars or any comfortable foods with me, never never weight myself or go to a restaurant that posts the calories online. I will need to think more about this, but there's a lot of hacks-- especially when traveling.

What kind of support do you get from family or friends? *

Very very little from my family. They ignore it mainly and told me that I don't have a disorder. My few best friends are amazing, but it took me a long time to find them. They never judge me and only try to help/understand my needs.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes--a few people, including doctors, discounted my ED history because I "look so happy." Friends and family say I am "too smart" to have ever done that. These cases have demonstrated how complex invisible illnesses are-- it's my social, intellectual, and physical appearance that people misjudge. A notable example comes from my old friend, who would say "anorexic? but you eat!-- as if an ED is that simple. The condition is really misunderstood.

How has your chronic illness affected your relationships? *

I think people are scared of me. EDs are scary because most think we are on the verge of death, slowly killing ourselves. In high school, at my worst point, I lost all my friends; they were confused on how to address it I think. There is not much awareness of how to help someone with an ED-- the go to response is to tell someone else about it, like a doctor or their parents.

Is there anything you are afraid to tell people in your life? *

That I will always have an ED. I am 26 now and I have accepted it as part of my life, and will always have one, even if to a small degree. This does not mean that I can be trusted or that I hate myself. I believe that framing EDs as complex mental-physical disabilities/chronic illnesses can help de-stigmatize EDs. Most think it's my choice, it's a diet, and that I can just stop. Even if I was "cured," the world would still be largely inaccessible to people with EDs.

What is your best coping mechanism? *

Speaking out about my ED, sharing my story, and aligning myself with the disability community has made me feel so loved and empowered-- these last few years have been my "coming out"

What are you the most concerned about and the most hopeful for in the future? *

I do not think I will ever have a bad relapse again, when I drop below 80 pounds. My weight has been stable, yay! I even gained weight this year and I feel good about it. I am mainly concerned about forming romantic relationships, because companionship is very dear to me and few people have ever stuck around after I disclose my ED.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

We should discuss the "pro-ana" online communities that get a lot of hate and censorship. It is a tricky but important topic.

What makes you energized or enthusiastic? What drains you?

I love writing and thinking so dearly. Joining academia has been so so difficult but the intellectual work calms me and makes me feel like I have a special purpose and things worth saying-- this is my experience, obviously one's value does not depend on their academic intelligence.

Any favorite books or shows?

Don't have much time for either, but I am PhD student studying the cultural and political role of social robots (like Roomba and drones), and I am super into digital and medical surveillance. That is usually what I am always reading about.

What is the hardest and/or best lesson your condition has taught you?

Best? That I really do want to live. I've had forms of depression and exclusion for years, carried by suicidal thoughts in my younger years. When my ED was at its most uncontrollable, I had a moment when I knew that I was going to die, kill myself from the ED, and that scared me more than anything. I found the will to live and I have never lost that will since.

What is the best purchase under $100 that helped your life

I cannot think of one. I will think about this more.

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