I could write an entire second memoir about navigating the US healthcare system while: 

• Fat
• AFAB (assigned female at birth)
• Nonbinary/Trans
• Autistic
• Immunocompromised
• Medically Complex
• Queer
• Disabled
• Suffering from Long-COVID
• Still Masking

Truly. Rather than take on something of that…size, I figure I’ll write about one particular element in this chaotic hellscape, which is: Proliance Surgeons. I’m going to give you a bit of backstory before I get to the colossal disaster that was last week.

This is a lengthy post but worth the read, I promise.

Part I: The Backstory

According to their website, Proliance Surgeons, Inc. is a conglomerate of seven medical groups established in 2002. It claims to be independent despite it having “over 400 providers…in over 90 locations,” which doesn’t sound very independent to me at all. I have had the worst luck with Proliance, so much so that I will never set foot in another one, which is why I’m writing this…

Back in 2015, I developed an onset of fairly serious symptoms. I couldn’t walk or move without spiking a low-grade fever and had worsening neuropathy in my legs and feet, severe dryness (nose, mouth, eyes, skin, etc.), always dehydrated no matter how much I drank, chronic sinusitis, nose bleeds, mouth sores, difficulty chewing & swallowing anything without choking, massive fatigue, joint pain, muscle pain & fatigue, symptoms of Raynaud’s syndrome, swollen parotid glands, salivary gland stones & infections, acid reflux, GI symptoms, etc. 

My primary care physician sent me to one of Proliance’s ENT’s (Ears/Nose/Throat docs or an otolaryngologist) because my parotid aka salivary glands worried her. Something to note is that I’ve been to six different Proliance locations since 2015. Every last one of them has the same “treat ‘em and street ‘em” feel. 

Round 1: Fight!

We’ll call this first ENT Dr. Phobic. White, male, in his late 50’s. He walked in, ignored my entire file & list of symptoms, glanced briefly at me, and declared me fat. He didn’t look into my mouth. He didn’t read my history or ask me about it. He literally said to me, “You have parotid stones because of your weight. If you stop eating so much, all your symptoms will go away.” While obesity can be linked to an increase in parotid stones, this was not the case with me, especially when you group it with all of the other symptoms. 

Having been to quite a number of ENT’s in Texas, I couldn’t believe that Dr. Phobic literally never laid a hand on me or looked in my ears, nose, or throat… you know, his job. He walked in, saw a fat AFAB, and he was done. He was in and out of the room in under 5 minutes.

I was PISSED. I demanded to see a different ENT. (I should have left Proliance there, but I didn’t. My mistake.)

Round 2: Too Hard

I was then sent to the doctor at this location who they claimed was their “specialist” in “challenging cases.” Read: People who are seen as a pain in the ass because they actually expect medical treatment. Dr. Too-Hard was a woman in her early 50’s. She looked like her bones were made of metal rods from all the tough-as-nails work she did bouncing patients, but I get ahead of myself here.

To her credit, Dr. Too-Hard spent 30 minutes with me at the first appointment. She said I had a slightly deviated septum (it’s more than slight but shrug) and sent me home with some antibiotics for my sinus & parotid gland infection. The same antibiotics my PCP had already tried…twice. When this didn’t work, she gave me a course of prednisone (steroids), which my PCP had already tried. When that helped but not enough, she told me that no one got fevers from movement and that I was too complicated a case for her. She suggested I return to my PCP.

She’s not wrong that I am complicated, but no where in this convo did she ever suggest I see a rheumatologist or that it could be Sjögren’s. Considering she works with people’s eyes, she should have suspected that but to get there, she would have had to spend more time with me than Proliance encourages.

(It ended up being that I have Sjögren’s Disease as well as Ehlers Danlos Syndrome, which explained every one of my symptoms. Once I began taking medication for this, my symptoms went way down. Surprise, surprise, it had nothing to do with being fat and everything to do with genetics.)

Round 3: Too Normal

Just in case you think it’s just me, it’s not. Molli has had chronic sinusitis and allergies since I met her back in 1994. That’s 31 years for those of you who aren’t math-ing today. She also saw an ENT at Proliance back in 2014, two years after we moved to Seattle. This doctor told Molli that she had “idiopathic rhinitis” and that there was literally nothing to be done to treat the severe inflammation in her sinuses, the headaches it caused, the sneezing every time the pollen count rose, and the chronic sinusitis she had dealt with most of her life. I cannot express how bad Molli’s sinus issues have been for decades.

There seems to be a system at Proliance where the doctors are meant to treat very simple cases of the sniffles and if you don’t fit perfectly into that simple box, you’re bounced. They don’t take complete histories, they don’t listen to their patients, they just write you off. Done. Now give me my payment.

Round 5-6: Not Enough

When my endocrinologist listened to my complaints about my throat and potential thyroid, she scanned me and discovered suspicious nodules. When the biopsy suggested cancer, she recommended a surgeon at Proliance to do a full-thyroidectomy (thyroid removal). Because she so highly recommended him, I made an appointment. 

The surgeon stated that even though the biopsy suggested cancer, he didn’t believe it was cancer. He didn’t recommend removing my thyroid at all and kept going on and on about the risks (needing to be on hormone replacement therapy for the rest of my life). Well, the alternative was a cancer that could spread across my body and kill me. Taking a daily pill seemed the better alternative. I pushed back. 

This surgeon tried three times to talk me out of a procedure that my endocrinologist highly recommended. I kept pushing and we scheduled the surgery.

The morning of, he still tried to talk me out of it. After I woke up, he apologized to me. Apparently, my thyroid was riddled with cancer. Lots and lots of it. More than what showed on the ultrasounds. His words were, “This absolutely needed to come out.”

In the process, he possibly nicked on of the nerves feeding my voice box / vocal chords. This is according to the vocal chord surgeon I saw post-op when I found I couldn’t speak loudly, project, or sing even months after surgery. I’m glad the cancer’s gone, but if he’d been on board with this necessary surgery to begin with, would he have taken better care during the surgery not to damage the nerves?

Which brings us to last week…

Round 7: All the Woo

Mast Cell Activation Syndrome, which is something Molli and I both have post-COVID infection, makes everything ear/nose/throat twenty times worse. Our autonomic dysfunction/Long COVID doctor suggested Molli see an “excellent ENT trained in dealing with MCAS.” This sounded like a fucking unicorn so we jumped at the chance, even though the doctor is part of…you guessed it, Proliance Surgeons.

I mean, they can’t all be bad doctors, right?

We scheduled this appointment and had to wait three months for it, which is common in  American healthcare. The waits can be even longer if the doctor is a good one. By the time the appointment rolled around, we were ready. We were going to get answers! Treatments! Something!

At least they began by doing a CT scan before the doctor saw Molli. The PA (physician’s assistant) came in and informed us that Molli would be getting scoped as well so she would need to remove her mask so they could numb her up.

Because both of us are immuno-compromised and high risk, we mask everywhere. We don’t go to concerts or events with large groups of people, etc. so being at the doctor’s office with a significant number of unmasked people (20+) is already more risk than we usually take now that COVID is a thing. I bring this up because the PA was wearing a baggy-blue, which is my nickname for the disposable, blue face masks worn frequently by medical professionals that do jack all against airborne viruses like COVID (due to their not being fit tested). 

If Molli takes off her mask—her only protection from illness in this old building full of sick people—the PA’s blue mask will do very little to protect her, so we asked if he could don an N95 or even a KN-94 mask. He said he would see if the office had any. When he returned, he said they didn’t have anything but the baggy blues.

Let that sink in. 

COVID aside, doctors treat all sorts of patients, including those with zero immune system after chemo or an organ transplant. Not to have any properly protective masks in an entire office is like saying your doctors don’t wash their hands…

I offered him one of our N95 Readimasks and was surprised that he took it and used it. Go him! (Seriously!) Molli took off her mask and was sufficiently numbed up for the endoscopy. (She had one a year ago with her colonoscopy so I was curious as to the comparison.) 

The PA asked if we had another Readimask for the doctor, and we did. The PA left and then returned stating the doctor would wear her own mask. I hoped that meant she had her own proper mask. Plenty of my doctors do so the red flags hadn’t hit too much yet.

Dr. WooWoo, which is what I’m going to name this doctor, walked in wearing a baggy blue. She then proceeded to go through Molli’s CT scan in under a minute. She rattled off body parts like she was lecturing to a colleague and not a patient. I’ve had a lot of physiology & anatomy classes back in the day and even then, there was no way to follow her. Her comment on the CT? “Your sinuses are perfect.”

No. No, Molli’s aren’t. Her allergist/immunologist, autonomic dysfunction doctor, and PCP would highly disagree with you there, Dr. WooWoo.  She reached out for the scope but I stopped her and asked if she would please put on a proper mask because we were immunocompromised. 

Dr. WooWoo: How are you immunocompromised?

Me: Mast Cell Activitation Syndrome for a start.

I didn’t even list off all of Molli’s comorbidities that make her immunocompromised, but had she bothered with a history, she’d know that. Had she listened to anything we’d already said to her, she’d know that again.

She left the room for 10 minutes. I can only assume she had to scour the entire medical building to find something other than a baggy blue. She returned and scoped Molli in under 3 minutes. I’ve seen doctors spend more time listening to someone breathe than she did with the scope. When she played it back for us, again going WAY TOO FAST, you can visibly see where she scoped one side and then on the other, quickly jabbed it in and out of the nostril. You can’t see anything but one big blur because she didn’t bother looking. Of course, that’s the side with the deviated septum, which Molli also has. Those can lead to clogs and other issues that she didn’t even bother checking for in her hurry.

Dr. WooWoo then told Molli that she had acid reflux. I did see scarring in the scope, so I would agree, but her answer on how to treat it was scary.

Step 1: “Stop eating before bed.”

Step 2: “You need to stop putting bad things into your body. Only good things. This homeopathic powder will reset your gut and your acid reflux will stop.” 

She then handed Molli a photocopy of a website print out for some woo powder that runs $90 a month that you can get on Amazon. This powder wasn’t even a probiotic. It was literally marshmallow root and a few herbs. *facepalm*

First, Molli doesn’t eat before bed. If she’d bothered to actually ask Molli about her eating habits, she’d have known that. Second, I go to a doctor for medicine based on actual, peer-reviewed science, not snake oil. While gut health is important, fixing it isn’t something that’s going to stop acid-reflux, especially in someone with MCAS. Molli’s prior endoscopy showed ZERO evidence of acid-reflux. This is a new symptom and one severe enough to have caused visible scarring to the esophagus. Visible enough that I saw it on the scope before the doctor pointed it out and knew what it was.

Dr. WooWoo didn’t bother comparing the scopes either so she had no idea of how frightening it was to see that damage to someone who knows the complete story. (Rather than snake oil, we’ll be going back to Molli’s GI doctor about her new reflux issues.)

She then told Molli that she needed to get a good naturopath for her MCAS. 

Okay, so Molli’s PCP is a naturopath, so I’m not knocking that, but Molli’s PCP also believes in science and actual medication. He has no issues with actually treating diseases and figuring out full-body issues. But Mast Cell Activation Syndrome is SERIOUS. If you don’t get it in check, it will kill you by shutting down all of your organs. You do not take essential oils and other garbage for it. That’s a great way to die.

Also, Molli already has two doctors for her MCAS: her immunologist (who actually has an MD and PhD behind her name, not to mention specialties in autoimmune and autonomic systems) but her autonomic dysfunction doctor who is one of the only specialists within 300 miles with his qualifications. What we don’t need is another naturopath. But she didn’t bother to even ask. Between the woo meds and the assumptions, we left with no intention of ever returning to ANY Proliance Surgeons office ever again.

That shit right there is medical malpractice, or it should be.

What’s worse is that we don’t know if some of this happened because we mask or because Molli’s trans or what. Dr. WooWoo walked in, made several assumptions, and then proceeded to try and “tream ‘em and street ‘em” on a complex case—one that’s thirty years in the making because American healthcare is shit.

Proliance Surgeons exist in Washington State, a place I’ve been told has excellent health care. While I’m hesitant to say Texas has better health care, I’m tempted to say it because thus far, Washington State has failed us time and time again in this arena. I love the Seattle area. I love the beauty of this state, but damn if this area isn’t full of doctors who are in it for all the wrong reasons, not to mention those who are sure that if you eat some fad diet, you will be perfectly healthy, genetics be damned. The fatphobia, ableism, transphobia, and prejudice in Washington State doctors is off the rails. 

I expected better.