By the time I was in my late twenties, I had bloomed from a thin 120 pounds to a full 200 pounds. I was angry and upset with my body, but not surprised really. When I dropped from 200 pounds to 114 pounds without any effort, I started to get worried.

It hadn’t exactly been kind to myself, nor had others. I was born in prison at a time before prenatal vitamins were provided to inmates, or special meals of any sort. From there I was fed a steady diet of cheap and easy to prepare “food”. My childhood staples were off-brand macaroni and cheese, powdered milk, canned tuna, t.v. dinners, and ramen.

I received healthcare as a child through government services. My pediatrician is still practicing in Eureka Springs, Arkansas. I guess he didn’t think the yeast infections in my diaper, UTIs, chronic ear infections, allergies, asthma, or the fact that I got sick every time the weather changed were related. When I started getting an insanely itchy rash that fits this description to a tee, I was only 2 and doctor Kresse didn’t have the internet. He told my mom to avoid Tide detergent and everything else was just growing pains, including my constantly rolling ankles, or the fact that I could swing both legs behind my head without hesitation. You know, normal kid stuff.

Once I left home I went on a journey across the US, living and working from coast to coast. I almost always had roommates and became well known for “turning not food into food”. One evening we had a group of friends over and after a long night of drinking everyone was hungry. I used items that had been left behind by previous tenants to feed eight. I felt a bit like drunk Jesus later that night when I was asked for the recipe. One ingredient was literally “those little cream cheese packets you can get for free sometimes”.

I spent a lot of my time numbing out or ignoring my body. My behavior would probably seem irrational to those who didn’t know I was raised in a cult and recently escaping. As part of that rebellion I picked up a smoking habit at 18 that would haunt me for nearly a decade.

Despite my self abuse, there were many times as an adult I wanted to see a doctor about my health. Like the two years I lived with a hole in my eardrum, something only remedied by elective surgery (starting at $25,000). Or the month where I had eye infections in both eyes and lost some of my long-range sight before I saved up enough for the prescription. Sometimes I was forced to use emergency services, like the time my throat started to close after applying a home remedy to what turned out to be strep.

I relied on places like Planned Parenthood to ensure my choices weren’t being passed on to anyone else, but was often judged and treated harshly by staff. At one point I elected for an IUD, not knowing what a serious health risk it could pose, because I wanted to save money on birth control. When I showed up for my appointment to have it removed I was told I could take an aspirin for my pain and nothing more. No explanation of the hell I was transported into. I had been bleeding and cramping heavily for an entire month. You know, normal women stuff.

Occasionally I would see a doctor when an employer provided health care. Most of the time they would want to treat my psychological symptoms and ignore what must be a perfectly healthy body (aside from a little pudge as the years passed). I had one doctor try to give me a bi-polar diagnosis after only visiting with me for 10 minutes.

When I decided to quit smoking (and start vaping) I was over 200 pounds. I don’t know how much exactly, because I was terrified of seeing that number. Once the scale read “198.5” I stopped stepping on it.

The next time I saw a doctor was a few years later while I was living in Manhattan. It was the first time someone took an actual interest in my health, albeit misguided.

By then I had dropped down to 114.5 and was unable to stop the decline until I eliminated wheat/gluten from my diet. The process of losing the weight had been violent and painful; Something I was only able to endure because a friend introduced me to the stoner life.

I told my new (insured through work, recommended by a friend) doctor about my confusing history. I had been wheat/gluten free for about 6 months when he ordered an endoscopy/colonoscopy. I was told I would wake up in a twilight haze, giddy and loopy. Instead I woke up screaming in pain, vomited bile, and barely limped to a cab.

But nothing would look abnormal inside of me, my villi already healed and no antibodies showing up in my blood. I was told I was “perfectly healthy” and since my coverage was about to expire, was given a course of some of the most powerful antibiotics available “just in case”.

My face broke out in reaction to the antibiotics and just sort of stayed that way for the next year. I started getting extremely dizzy when I’d stand, to the point of my vision narrowing and darkening. I was fatigued, bloated, cranky and probably starving for good nutrition.

It had always been hard to do things with my hands. A writing assignment in school would mean several breaks for the cramping and pain. But now it was getting hard to brush my teeth without losing strength and having to stop for a break. Or brush my hair without my shoulder painfully half popping in and out of joint.

My hips had always made this sounds. I called them my “Barbie hips” because I remembered how the dolls legs use to lock into position with a pop. Now they were too painful to lay on, waking me up in the middle of the night. When my shoulders followed in suit, and I was forced to sleep only laying on my back, I sought medical advice.

This time I was lucky enough to have Obamacare, and I learned what sort of doctors came along with that type of insurance; Doctors in residency.

The doctor to be that I got to see meant well but was probably less helpful than your average RN. It’s amazing what a couple years of experience in the field will do to your diagnostic skills, but I digress.

She preformed a simple grip test in the clinic after hearing my symptoms and referred me to a Rheumatologist. I was the youngest person in the place by about 30 years and she didn’t take me even remotely seriously.

Her assessment included about five minutes of asking me questions and skimming to the next before having time to type anything I’d said. I was told to change into a paper gown for examination and my partner left the room for privacy. When she returned she announced “You have hepatitis C, maybe that’s why your joints hurt.”

I went from a gentle shiver to full on shake as she examined test results from previous blood work. I asked to see and then realized she was reading the wrong column. She acknowledged her error but did not apologize for her mistake or give me any time to recover. Then she walked up to me, asked for my hands, proceed to start jabbing at me and wanted to know what hurt. It was so fast that I had no time to respond before she moved onto prodding me somewhere else.

She was done with her exam less than 5 minutes from the time my partner had been dismissed to the lobby. “What happened?!” he asked and I said “She read my chart wrong, told me I had Hep C, then said I didn’t have Hep C but she wasn’t sorry, and then she told me it was just stress. Fuck this shit, let’s go home.”

Even the dentists available through Obamacare were butchers. During a filling I got my gums blistered with the UV light while the dental assistant played with her phone. It started to seem safer to just google my conditions and hope for the best.

After learning about it’s co-morbities and the fact that I have an aunt effected by it, I joined my local Ehlers Danlos Syndrome group. The first meeting I attended was intense; All those strange physical oddities that I thought were unique to me were actually very common with EDS. These people had been through many of the same horrors with doctors and had lost partners and friends to their invisible illness.

One of the members of the group even recommended a doctor who takes Obamacare and happens to know quite a bit about Ehlers Danlos. Someone who would take me seriously, knowing the signs and the dangers that I could be type 4; The kind that makes your organs and blood vessels weak. The kind that gives you a life expectancy that is significantly shorter due to complications.

Despite the fact that I filled out my renewal forms in December, here it is March and I am still waiting for the state department to contact me. I am uninsured, but I will not accrue a penalty since I’ve made every possible attempt at getting said insurance. Instead, I will probably go without medical care as I have for many, many years.

Before my coverage ended I went to a (different) doctor one last time for help. I told her that my “shark week” had gotten so painful I was desperate. I had been unable to move from the floor, vomiting on myself in excruciating pain the week before. She said the first step was birth control, which is extremely dangerous if you have type 4, as it increases your risk for stoke and heart attack. The hormones in birth control also effect the “stretchiness” of your joints, something that is already effected by Ehlers Danlos and can lead to extensive injuries.

I went home and started my investigation again. It is sad and disgusting the amount of effort science has put into making sure dicks stay hard, while women die in droves of this painful ailment that lacks adequate funding or research.

After weeks of googling my best guess was that the hormones from an animal that produces milk might be adding to an existing hormonal imbalance. So I quit dairy. Each following month got easier, and now I bleed like a 15 year old; Just enough to know something is happening, but not enough to hinder my day.

Of course, I’m the quack. I’m the weirdo. I’m the skinny white girl on some fad diet. I’m the bitch you don’t want to deal with if you’re a server. Nobody wants to field 20 questions on the safety and cross contamination of their kitchen. And, it turns out, just a little is enough to raise my body’s ire. A tiny crumb means I get to bleed like a 7 day abortion.

So, I rarely go out. Most social interactions revolve around eating commercially prepared food or drinking alcohol; Two things that will make me feel like life isn’t worth living in this body.

And I feel like people are constantly judging me. I’ve diagnosed myself, pending an expert evaluation, and that makes me a target for words like “hypochondriac”. I don’t want to defend how shitty I feel to anyone, that’s more energy that I need to make myself well. I even stopped attending my support group because they meet early on Saturday, and I always feel intensely hung over when I drag myself out of bed too early.

I feel lucky though; I know so much more about my health than the average American. Most people won’t start eating the way I do until they are desperate to save their lives; And many more will simply load up on prescription after prescription and ignore the source.

Most people think it’s ok to get the majority of the calories from refined and processed foods. They’ve been fed garbage their whole lives, as I was, and can’t see what a detriment it is to their longevity.

Like my best friend. He had an autoimmune condition that made it impossible for him to drink alcohol. So, instead, he drank the natural sugar version of Coca-Cola and Dr. Pepper daily. He would usually finish 1–3 a day. I begged him to stop.

The World Health Organization recommends around 25 grams of sugar a day. Each soda has about 40 grams. I told him this was as bad on his pancreas as alcohol, but he said it was his one remaining vice and he loved it.

His name was Bobby and he died a year ago in April, a few days after his 43rd birthday.