Three weeks of being fucked over while trying to abstain from fucking.

When the loins burn, the fire is all-consuming -- one might even say, disabling.

Content note: The below contains sexual language and has nothing to do with anarchism or anarchist theory because I’m completely overwhelmed by my disability at this time — which is a struggle I will focus on at another time: How do we incorporate everyday anarchism into our lives when our disabilities have pushed us to full or overfull capacity for living our daily lives under late-stage capitalism? How do we enact radical changes in our lives when we are fighting just to exist? I don’t have the answers to these questions, but I hope to have conversations that will lead, if nothing else, to better possibilities. Because a better life is possible, even for disabled people.

I don’t know what, exactly, this generated image has produced with the prompt “crotch on fire,” but it’s something vaguely gray-blue being consumed by flames.

It’s taken me almost two weeks to write this. The pain symptoms I’m experiencing (described below) are once again bad enough that my focus is deeply impaired. Add to that, I have been prescribed oxycontin, 4x daily, to help distract myself from the pain. It turns me into a zombie, but a zombie that is not feeling as much pain.

Below, I talk about my diagnosis of genito-pelvic dysasthesia/ persistent genital arousal disorder: how it feels and how it affects me.

Though treated by sexual medicine, GPD/PGAD is not a sexual disorder or sexual dysfunction. It is a pain disorder of the genitals, perineum, and anus (not everyone with the condition experiences symptoms in all of these areas). The pain can manifest in many ways: itching, burning, throbbing, and because it is taking place primarily in the genitals, wires are crossed somewhere in the system that identifies pain, causing a feeling of what seems like sexual arousal.

For some of us with GPD/PGAD, we feel this arousal constantly; it’s not fun. I’ve had people tell me they wished they had this; they shouldn’t. Some of us are constantly on the edge of orgasm; imagine functioning in your day to day life while you are edging the whole time — it can’t be reliably done. Some of us spontaneously orgasm — some of us all day long. And for some of us, every time we orgasm, the more it hurts, and the more we want to do it again because orgasming doesn’t actually help.

Our minds are telling us that our bodies want sexual stimulation, but our minds are wrong; it’s a misinterpretation of the pain signals. During a GPD/PGAD flare, sexual stimulation does not relieve the symptoms: it makes them much worse.

There is no cure for this condition. Treatment is hard to come by. It is not recognized by Social Security as a disability. Combine all this with the social stigma, lack of understanding, and frankly, the rudeness many of us encounter when trying to be frank about it, and the situation leads to worsening mental health, which can cause a worsening of symptoms. Many people with this condition choose suicide over living this life. I can’t say I blame them.

Below begins where I started writing this, nearly two weeks ago…

The genito-pelvic dysasthesia/ persistent genital arousal disorder symptoms are back at full, mind-boggling force since receiving notice that the state is terminating my caregiving hours. The medications I’ve been on since being diagnosed in October (gabapentin topical and oral, Klonopin, and Ambien) had reduced the symptoms by about 80% — to an incessant burning, but no longer the constant clitoral agitation that gets misinterpreted by the brain as sexual arousal.

GPD/PGAD symptoms can be worsened by anxiety, and my anxiety has certainly been terrible during the past three weeks of worrying about the termination of my caregiving hours. As I wrote about my experience of PGAD back in April, it feels as though “my loins will never be sated.” I feel cartoonish in my extreme faux desire.

It is for this that my partner and I need the income from the caregiving hours so that I can get the annular tears in my back fixed, which should help the GPD/PGAD symptoms a great deal, if not outright put an end to them.

We submitted an appeal to the state on July 12th. As is my legal right, this appeal included a request for all the supporting documentation which was used in the decision to terminate my caregiving.

My caregiving hours were technically terminated on July 21st. I didn’t receive notice in the mail that they had been terminated until July 22nd. On July 25th, my supports planner informed me that her agency had received notice of my appeal, however I have received no contact from the Department of Health that either acknowledges my appeal, nor provides me with the documentation to which I have a legal right to access.

My damn memory: I don’t remember who, but one of my many case managers or supports planners or agencies sent word to me that the hearing must take place within 30 days of my termination.

Should this happen according to the bureaucratic rules that are in place (and we all know the bureaucrats are allowed to dodge or break the rules, but we of the non-ruling class are not), there are fewer than three weeks between me and my hearing, and yet I have not received the requested documentation that led to my service termination, let alone been given a date for the hearing.

With my luck, I will be given a hearing date for the time I am meant to be thousands of miles away, having my annular tears formally evaluated. With my luck, I will be fucked over. But that comes as little surprise as the system is performing as it was designed.

If it weren’t for my supports planner who oversees my case emailing me the termination letter on July 11th, neither my partner-caregiver nor I would know that the caregiving service had been terminated until I received a letter from the state the day after its termination.

In fact, the home health agency through which my caregiver-partner is a contractor has received no notice at all of my service termination. This means that they would have allowed a caregiver to work their hours without getting paid for them; a fucking bureaucratic travesty.

Where I live, Medicaid caregivers are only paid fifty cents more than the local minimum wage, which means that caregivers in my locale are living in poverty on their $17 per hour. Most caregivers have multiple clients (care recipients) and work multiple jobs to make ends meet. Medicaid caregivers are contractors, not employees, and so are not entitled to benefits, overtime, or other protections. The home health agencies do not reimburse for travel expenses (such as going from one client to the next). This is fucking outrageous that this behavior is allowed to take place. And yet, here we are: again, not a surprise.

Again, not a surprise: The system is performing as it was designed.

If that weren’t enough, I received a letter on Friday, July 28th, from the state — this time from a Department of Human Services’ contractor which provides multiple services.

First and foremost, they are the people who run the so-called “independent reviews” of disputes about medical necessity claim denials between providers and Medicaid. In these disputes, the onus is put on the patient to file an appeal with this contractor to receive an “independent review.” If the appeal is lost, the patient owes this contracting company nearly $400.

Should you have multiple appeals you would need to file if Medicaid is constantly denying your provider’s attempt at treating you for what they deem is “medical necessity,” you would, like me, have to file multiple appeals (which I have given up doing because of the cost of constantly losing).

The doctors hired by this contractor have no knowledge of my rare medical conditions and therefore dismiss the “medical necessity” of certain tests, treatments, and even appointments. But that’s not why these motherfuckers sent me a letter; this contractor works in other capacities with the Department of Human Services, too.

Several weeks ago, I received a call from this contractor regarding my temporary disability assistance case (which is linked to my Social Security/Supplemental Security Income appeal — I can only receive money from TDAP, which is less than $400 per month, if I have an open case with Social Security). The person calling from the contractor wanted to know if I had legal representation for Social Security, because if I don’t, then the contractor provides a Social Security representative for my case. I told them I did have representation; they wanted to know the law firm, so I supplied them with the information.

Now I’m getting a letter from the very contractor who keeps denying my care saying that they want to represent me in my Social Security case. The absolute audacity of how this system works still manages to take me by surprise from time to time: The state doesn’t want to pay my caregiver minimum wage for 23 hours per week, but it wants to represent me in my Social Security case because on the off-chance that I were to win, the contractor would receive 40% of my awarded backpay. They won’t pay to help me receive the care services I need, but they’re happy to pay for legal representation if that means I might end up paying them.

The company that contracts with the Department of Human Services has $1-5 billion in revenue per year. It contracts with governments in the US and UK to provide similar services as the ones I have described above. One of their stated focuses is to match people with work they can successfully perform — to keep them off disability. Which is all well and good, but I’ve got two paths in which I can currently successfully perform: returning to sex work, or as my career assessment by the state concluded, “be a blogger.”

“Be a blogger,” they said. “Writing will pay off. You’ll be able to support yourself.” Said no one familiar with the state of publishing in the last ten years, ever, except my deluded career assessor.

Well here I fucking am, writing my heart out since 1997. This hasn’t lead to work I can “successfully perform” yet. With writing comes deadlines, with deadlines comes anxiety, with anxiety comes the exacerbation of the GPD/PGAD, with the exacerbation of the GPD/PGAD my mind cannot focus on anything other than the desire of sexual stimulation.

It’s taken me about a week and a half to write this post because I keep having to physically remove myself from it — it’s so anxiety-inducing to think about these things, that all I want to do is fuck. (Social Security does not recognize sexual activity as self-harm, no matter how badly you hurt yourself while sexually stimulating yourself, no matter how much it interferes with your life.)

Three weeks of the returned agitation. A week and a half mulling over how to write this, what to say and how to say it without the faux arousal consuming me.

I have failed in abstaining from sexual activity during these weeks (abstinence is best practice during a flare because additional friction causes the flare to worsen). I have fucked myself until my crotch fire feels as though I might be harboring the surface of the sun between my thighs. I have twitched, rocked, spasmed, stimmed, moaned, and cried as my mind has fixated on the signal it is receiving (“commence sexual stimulation immediately”). Surely, this behavior is conducive to a work environment, right?

I have fucked myself until my crotch fire feels as though I might be harboring the surface of the sun between my thighs. […] Surely, this behavior is conducive to a work environment, right?

I’m trying to abstain from fucking and I’m still being fucked over.