When writing a facebook status likening my struggle with intestinal endometriosis to an infamously violent creepypasta focusing on insomnia, I realized, truly, how much damage this is doing to me. To keep consistent with unnecessary (and probably misleading tbh) technicalities, it isn’t the endometriosis itself. It’s the wreckage it has caused. I have to make a choice every morning not to go into the darkness again. Every day, I have to be extremely aware and actively ensure that I don’t celebrate my weight loss or allow others to, because I have to remind myself that a number on the scale is not tied to the value of my life because I used to tie it to the value of my self, and most (including many of the doctors I have seen) think that I am “still too overweight” to feel the effects of malnourishment, and that I should be celebrating the weight loss, in turn then celebrating the fasting mandated by my wrecked intestines; that I should ignore the swelling from my body trying desperately to hold onto every drop of water it has magically been able to keep down during the past week. I am often dizzy, lightheaded, physically unstable when I do get to be mobile, and my function is impaired. At my own doctors’ advice, I have to every so often go to the ER to get IV fluids to maintain enough hydration to survive. Last time I went they told me to discuss a feeding tube with my PCP.
I stil have not received any effective treatment and have little hope I will ever get it.
Because of this, I constantly have to reaffirm my value as a human being, the value of my wellness, and the value of my life, because these things do not seem to matter to the people whose licenses seem to be respected more than my health; who have a license that people agree is powerful enough to say to my face that I am untreatable, because my pain is my fault, or my pain is psychogenic, or that I am neglecting myself because I won’t take the diverse collection of unnecessary psychotropics every day anymore that gave me tremors and worsened my real medical condition — but on record helped seem to constantly erase any credibility I may have ever had.
They have put me on so many psychotropics. When it didn’t work, they upped it until they legally could not (in most cases, anyway), and when increasing the dosage was no longer possible, they added more or changed to other psychotropics. The psychotropics didn’t touch my real pain because even in the case of most clear-cut mental illnesses, they don’t reah that core. So for me, who has C-PTSD and inestinal endometriosis, meds like Mellaril, Ritalin, Adderal, Haldol, Prolixin, and Risperdal did not help. They could not take the nightmares away, let alone the 10 day debilitating periods or the chronic pain which helped to isolate me as a child. Even Welbutrin XL, Prozac, Klonopin, Remeron, Clonodine, medicines intended to help treat depression, anxiety, and insomnia did nothing to heal me. These lists don’t cover half of the pills prescribed to me by uninvested doctors, and the years I was in the psychiatric wards most often were the same years I was often prescribed to take more than a dozen pills a day.
I was told I was literally “untreatable” by a psych NP because her treatments were ineffective. This is the kind of hubris from doctors that impact a person’s decision on whether it is worth living anymore, because it is a deprivation of hope. Ultimately, a person’s actions are their own, but you would think psychiatrists would understand the possible repercussions of saying the equivalent of “Your pain is an inoperable cancer, and I don’t care to understand why that is.”
I am embracing self-love more than ever because apathy and neglect are often more psychologically damaging than direct abuse, and I’ve experienced enough of both and have met enough survivors of both or either to know how deeply true the studies in this are. I am no longer a scapegoat or target or someone who is convenient to hurt so that others may feel superficially better, because I seem to no longer be a someone at all. I am not even a coherent demographic of Psych Patient™, with no mental illness matching even a tenth of my current symptoms. They still want to pump me with drugs which have historically all been ineffective (or worse), but they won’t even consider that other options could be more effective.
This tells me that they feel my life is worth less than the bribes many of them legally receive from BigPharma in the guise of “research.” (I don’t know if scientific experimentation as a motive, especially when done carelessly, is truly any more ethical than accepting bribes to do it.)
So I have to remind myself every day that I have value; that like everyone, I am worthy of happiness, health, and well-informed and compassionate care. I have to remind myself I, like everyone else, am worthy of pursuing them; that I am worthy of advocacy; that I have the right to make the correct decisions for my body, my life, and my health, regardless of people who leverage their positions to try to coerce me into further wrong, more damaging choices; that I should trust myself and my body; that my body is not, and has never been, the enemy like I was taught and came to see it as. The problem — I do not say enemy — here is Nero, the ancient figure who abused his position of power, and whose dereliction of his subjects was illustrated in the legend of his fiddling while his empire’s capitol burned. He was the same person who hoarded the burned land for his Golden Palace, because a person like actively seeks and will find fortune in another person’s misery.
I know this sounds like vilifying. A black-and-white portrait of malicious doctors and helpless patients, but it’s not. The core of all Neros is not the sadism or arrogance they perform for the world. That is their legendary fiddle or cithar; the instruments that distract from the context, the content, the fact that the Nero is unhappy and was given a stage to allow that profound unhappiness to become thoughtless and wreckless on a more massive scale. It becomes toxic, and the Nero, being or believing they are high of station, feels entitled to answer to no one.
Not even themselves.
In the case of doctors, the toxicity is many times permanent. In some cases, it is even fatal or contributes to a fatality. Consider the following visit, among the first in the long string of GYN appointments after I had done enough research on my own to consider endometriosis as a possibility:
“There is nothing more that can be done,” the doctor says, offering you a prescription that has long-proven ineffective. If these doctors were honest, they would say instead, “I have lied and whether intentionally or unintentionally, the bases are my own unchecked, careless misgivings. The chart weighs more than you do in importance, and the money I get for what I feel is thankless work outweighs the both of you.”
The door closes behind you, as you recount the at-least hundreds of hours of research carefully locating consistent evidence, vetted studies, and medical explanations they keep shooting down and in many cases, interrupting you before you even have the chance to make your case. You keep persisting, and they keep pushing back. Eventually you realize there is no point, and you suppose it’s because they hold the same belief as that EMT did who told you, “You may have the internet, but these people went to medical school, so what you found isn’t going to be reliable compared to their knowledge.”
But your research comes from respected medical schools and hospitals. Brigham and Women’s Hospital. The Cleveland Clinic. The National Center for Biotechnology Information. Plenty of studies, theses, and findings from doctors who lead in these fields. Surgeons with astonishing success rates with volumes of relevant cases. The cases that fit yours to a “T” so much they sound like your exact story when no formal diagnosis you ever received seemed to fit you well at all. They would cram you into it, even when your legs and arms spilled over the sides of the box, and say,
“The pills should be working,”
and more incponspicously, “It’s not me as a doctor. It’s you as a patient.”
And then directly, “So there is nothing more that can be done.”
It was only your first visit with this one, and you wonder to yourself, having made consistently healthy dietary changes, implemented regular activity, deligently taken your meds, “If this is not enough and they believe there is no reason it shouldn’t be, is there even hope that these symptoms will get better?”
Months later, you are starving and parched because you cannot eat or drink water, or you vomit with such severe radiating pain you lose some muscle control, and sometimes even lose control of your bladder. At 25, you’re wearing diapers. You’re infertile because of the lies your doctors told you; lies, that up until now, you felt you had no real reason to not believe. After all, they have a formal education, and you’re a dropout (with internet access.)
You are screaming with pain, and it doesn’t matter. You are wasting away, and it doesn’t matter. You have abnormal bleeding, bloating that makes you feel (and makes it look) like your organs will explode, and it doesn’t matter. You can’t walk well, and it doesn’t matter. You can’t sleep because of the pain, and it doesn’t matter. Pain wakes you up on the off-chance you do sleep (often not until long after daybreak), and it doesn’t matter.
After all, it’s not actually the doctors who can’t find a reason for your pain. It is you who found a reason they aren’t willing to investigate.
So, your symptoms impede your life, your growth, your future. They’re ignored, invalidated, and overly medicated with no improvement in sight. So your symptoms must not matter enough to the people who can help you.
As human logic might follow, does that mean you don’t, either?