When health "care" hurts

I don't want to write this post, but I'm going to anyway, because yesterday led to me completely losing my shit at a medical appointment. I left uncontrollably sobbing, shaking...and not even from the extremely painful medical test I had, but from how much lack of compassion and actual caring there was around providing me the recommended treatment. 

I've been keeping most of my medical traumas private for a while now (aside from what I put in issue 2 of my zine), after being shamed and judged by several people for talking about my health related experiences. But I'm working on overcoming the feeling that I need to keep quiet about these experiences, because I feel it's an important part of demystifying chronic illness and advocating for better understanding and care, for me and others who are sick or disabled. I don't want to let the judgment and shaming of a few people silence me, so I have to keep telling my story.

So, yesterday

Yesterday, I had a specialist appointment - an intake appointment at a clinic for women who have chronic pelvic pain and endometriosis. I'd actually seen the doctor before, over a decade ago, and had a

very short but positive experience. So even though I knew some of the appointment was going to be unpleasant and painful (because of the tests), I felt hopeful it would be a positive experience and helpful overall.

As usual, I did everything I could to prepare and be a "good" patient, always the people pleaser. I brought a typed out medical history related to the various pelvic pain issues I've had (I do this with all new doctors, especially in case my throat gets too irritated and I start losing my voice and can't provide a complete history aloud). I filled out their optional research questionnaires well ahead of time, and read and watched all their resource documents and videos, just like they asked. I forced myself to eat a decent lunch even though I wasn't feeling well, so I wouldn't get too faint if the appointment went long. I meditated and went for a walk the day before so I would have some shot at a decent sleep (which has been elusive thanks to some new health issues these last few months waking me up a lot) the night before. And Bruno took most of the afternoon off to accompany me, as he does for many of my appointments - especially ones with new doctors or where there will be tests that might leave me feeling unwell.

The appointment started out fine. We got there early, I was feeling alright aside from my tender guts, and the worse than usual fatigue that's been plaguing me the last few months (thanks to stress and the aforementioned sleep troubles). I wasn't too nervous, even though I knew how unpleasant the tests would be. I was still feeling pretty positive about the whole thing.

After getting weighed and moving to a smaller waiting room, then to a tiny and very warm exam room, the doctor (a colleague of the doctor who I thought I was seeing, who did most of my appointment - I'll call them "my doctor" for the one who I had been told the appointment was with, and "colleague doctor" the one who actually did most of the appointment) came in and began the intake. Colleague doctor was clearly ...unhappy (stressed out? overwhelmed?) by the complexity of my overall health problems and the pelvic pain itself. From the get go, I was being hammered with rapid fire questions but then cut off every time I tried to answer them. 

I felt myself getting anxious - doctors who are harried and frenzied like this make it very difficult for people like me, people who are nervous or anxious, to stay calm. For a change, I decided to be pro-active and advocate for myself not to have a completely stressful appointment. I told the doctor I was feeling nervous and too hot (which makes me feel ill even on a good day), and the rushing was making me anxious. I initially skipped mentioning how rough my throat was already feeling (I normally would have asked the doctor to read my typed history, but I had the sense that wouldn't go over well so I pushed myself to do the history aloud so it wouldn't be an issue). But I mentioned my throat hurting a bit later, hoping it would relieve some of the being talked over constantly. Colleague doctor acknowledged my assertions and turned on an air conditioner (apparently the room is hot because of the ultrasound machine), and said they'd slow down (which they did only a tiny bit, but enough for me to regain my composure). 

I did my best to keep my answers short and to the point and give only the most important information, and was as pleasant as possible despite being less than keen on the tone of the appointment, it wasn't anything I hadn't dealt with before. There seemed to be a lot of frustration that I had both vestibulitis/vulvodynia (this is pain that's in the vaginal opening rather than in the pelvic/abdominal area, where the reproductive organs are) and abdominal/pelvic pain. I wasn't aware that they didn't normally deal with vulvodynia, and was confused that it seemed like I shouldn't have been talking about it. I had actually tried to get a referral to the vulvodynia clinic last year but was rejected because I had complained of both chronic pruritus/itching as a new symptom rather than only the pain I'd had my entire life, apparently that made me not fit their clinic criteria. In any case, the doctor said that it'd probably be futile to get a referral to the vulvodynia clinic now anyway because they wouldn't take someone with complicated health problems like me. How I was supposed to know any of that is beyond me.

The exam and recommendations

Once that intake part was done, my doctor came in and colleague doctor began the physical exam while my doctor observed and asked some other questions. It was sometimes difficult to answer their questions because I was in blinding pain and the two doctors were talking to each other at the same time they were asking me questions (like, literally talking to each other over me, while I was talking) so it was difficult to follow while I was breathing my way through the excruciating pain the exam had me in... This part of the appointment, which I would have expected to be purposefully gentle, continued to feel very rushed and frenzied, but I was just sucking it up and doing my best to get through it. 

I won't get into too much detail, but like I said, this was a pelvic pain clinic, so the exam included an abdominal exam, then a manual pelvic exam, then a "q-tip test" (for the vulvodynia/vestibulitis), and finally what's called an intravaginal ultrasound. The first few parts were fine - some pain, but nothing I hadn't been through before, so I knew what to expect. The intravaginal ultrasound was new for me though, it uses a wand, which as per the name is used vaginally to get a view of the pelvic organs and surrounding tissue from inside. It was both not as bad as I'd feared it could be, but it was still incredibly painful during many parts of it, and all very uncomfortable to say the least. The whole point of it is to poke around and see what hurts where, and it was essentially around 10 minutes of excruciating pain and prodding.

An aside, but also - when did medical professionals forget that sterile gloves and hygiene procedures are for both the practitioner and the patient??? One more time where gloves were donned and then the doctor proceeded to touch all kinds of stuff around the office - stuff I said a little prayer had been sterilized, though I doubt it. Maybe I should have asked for new gloves to be put on, but they already seemed so annoyed at this point that I failed to advocate for myself because I already felt like they were starting to see me as a "bad" patient.

But that was all still okay, still par for the course as far as I was concerned. I wasn't exactly happy, but I was getting through it fine. I deep breathed through the end of the test and they told me I was doing great, and when it was over I was a little shaky. But I got dressed and took some deep cleansing breaths to calm down, and was really doing pretty okay holding it together. 

The two doctors came back in, and told me they didn't think I had any obvious or severe endometriosis (though they couldn't tell for sure as I'd never had a laparoscopy), and said that I should go back on hormonal birth control for my pelvic pain symptoms. There seemed to be some frustration also around my not being able to explain exactly what I was there "looking for".

Another aside, but this is something I have been encountering repeatedly in doctor's appointments, and it really confuses me... Why ask the patient in an accusatory tone, "Why are you here?" or "What do you want us to do?" I'm not sure if it's something they're taught to do in school with the intention of getting an idea of what the patient's expectations are, but as a patient it just makes me feel like they don't think I should be there or are somehow looking for me to tell them what course of action to take. It's very strange. Additionally, I'm not sure why they seem to expect me to know what the proper course of action to request is (or if that's even why that attitude comes up...), but often these questions are asked in a very curt manner, and I find it extremely off-putting.

Anyway, they asked if I'd tried various medications or treatments, and I said no to most of them, and they seemed a bit annoyed that I hadn't tried them. Despite the many doctors I've seen and told about all my issues, I can't help that they didn't inform me or weren't informed themselves on the conditions and treatment options. And I explained that I'd been trying to get a GI referral for a year to get my guts checked out but had been rejected numerous times due to long waits, as they also seemed annoyed that I kept telling them how my bowel pain was part of my pelvic pain issues, saying they are not GI doctors even though they confirmed the pain could be related. 

When I asked to clarify, they repeated that I shouldn't bother getting referred to the vulvodynia clinic for the vulvodynia (which they don't normally deal with and seemed annoyed I wanted help with), and that I should try working with their physiotherapist first or try getting referred later when my health is better (uh...what if it doesn't get better??). They said it seems like I'm hypersensitive to pain, have fibromyalgia, central sensitivity syndrome, yada yada (nothing new to me, which they were aware of) and recommended mindfulness, counselling, pacing, etc. all things I'm very familiar with already after years of dealing with these conditions.

They then asked if I'd be interested in doing their treatment "program" which is 3-6 months long and involves an intro workshop and a few appointments with a pelvic physiotherapist and a counsellor specializing in women's pelvic pain. I said that sounded good, and explained that it just might be difficult for me to attend a large number of appointments in a short amount of time, do early morning appointments, or manage longer sessions because of my fatigue and gut problems.

They said they it was fine, we could work around these things, even though the workshop was an "all day" session. I said if I was really unwell it might be difficult for me to make it on time or that I may not be able to stay the entire 5 hours, and they again said that it would be fine. They left at this point, and had the nurse (who coordinates everything and runs the workshop) come in to talk to me, but she just gave me a quick overview and said she had to leave work early today so she'd have to phone me later in the week to set things up. But then I guess she changed her mind and decided to have some administrative people do the set up instead, and took me over to talk to them.

I was exhausted by this point, and in a bit of pain from the exam, but was pushing through the last leg of the appointment and thought I had the finish line in sight. But this is where things went off the rails.

It shouldn't be this difficult

The two admin people who I was now talking to started explaining the workshop date was a single session (run once every couple months I think) and that attendance was mandatory to be able to then go on to see the counsellor and physiotherapist. I stated again that I could not guarantee that I could make it first thing in the morning or stay for the entire 5 hours because of illness. They seemed unsure if that would be okay but one went off to double check if they could make an exception so I could attend. She came back and said that the nurse (the one who I'd just talked to who said it was fine) said it was not okay. That I must be there no later than 10 minutes past the start time, and that I could not attend otherwise because it would be "too disruptive". 

I explained again that I was not well and couldn't guarantee that, as much as I could do everything possible to get there and be on time, if I was violently ill I may not make it on time or be able to stay the entire 5 hours. So the other admin person said she'd go back again and sort it out, and that they could probably make an exception. I started to kind of falter at this point, and got a little teary, just because I was so exhausted and was yet again being facing a situation where I was treated as if I not willing to comply with rules, rather than that I was sick - the old blaming the person instead of the illness. 

After talking to the nurse again for a long while, she returned and confirmed that there was definitely no exception to be made, and that I had to be there on time or I couldn't do the workshop. I was not only confused at this point - since I'd told both doctors and the nurse the same thing just moments ago with no problem - but also just totally physically and emotionally exhausted from having been there almost two hours, gone through a stressful appointment and an extremely painful exam...

I asked flat out, "So I'm going to be denied the other services because I can't guarantee that I won't be sick and can be there on time for the workshop?" And she said they weren't denying me services, but then contradicted that and confirmed I had to be there on time for the 5 hour workshop to access the other services that had been recommended to me... I clarified again, "Or else I won't be able to access the physio or counselling?", and she confirmed that was true. The actual health services, which were recommended as treatment for me, were contingent on the workshop attendance, and workshop attendance was contingent on me being able to arrive in the morning on time and remain for 5 hours, on a single day. She started saying she'd talk to the nurse and my doctor again later, and see if they can make an exception, and they'd have to call me...but by this point I'd checked out. I just said okay, sure, out of exasperation, and started grabbing my stuff to get out of there.

And then I totally lost my shit.

I just started sobbing uncontrollably - like really losing it - as I went out into the hall which was next to the front desk and waiting room. It is not like me to totally lose my shit to this extent, never mind in a public place. Like I couldn't open my eyes, or breathe, or stand up, I just crumpled into a pile of heaving sobs. I was just so tired. Exhausted, and tired of being sick. Exasperated from having to fight tooth and nail, beg, and plead to get medical care yet again. I'd had enough. I just wanted to go home, but I couldn't move nevermind stop balling. 

A woman who was walking by happened to be in the hall when I walked out there, before Bruno had even left the other room asked if I was okay and I sobbed no! And she led me to a chair and gave me kleenex, but I don't really remember what was going on, I was totally out of it sobbing away. But that woman - the long dark curly hair is about all I remember - who I interacted with for a few seconds was the only person that I interacted with the entire time I was there (aside from Bruno of course) who actually looked at me with compassion, as if I was a person. The only one who didn't have that horrible veil of "professional" distance keeping her compassion at bay. I wish I knew who she was so I could say thank you for giving me a glimmer of humanity in the horrible experience.

One of the admins came out into the hall and said they would get my doctor again, if I was willing to wait a bit longer. I didn't really want to, and I was struggling even to walk back down the hall to the office at this point because I was just so completely worn out, but I went back there and waited... all sweaty and shaking like crazy, and still crying but trying to pull myself together because I didn't want to embarass myself more in front of my doctor. I went back and waited because I still thought they would say it was just a misunderstanding and that it was all fine.

But instead, my doctor came in - someone who I previously had only good feelings about - who only minutes earlier said that it would be fine, and now seemed suddenly very impatient and irritated with me. Who was now telling me that I had to get to the workshop on time or I couldn't attend it, and if I didn't attend then I couldn't see the counsellor or physiotherapist.

I started crying again, and they just seemed more irritated, and started saying there were only so many spaces in the workshop, and it's in a different wing, and if I'm late then who's supposed to come get me and walk me to the room, and it's too disruptive, and if I can't make it then maybe I shouldn't go to it... I tried again to explain that I can try really hard to make it, but I'm really very sick and I can't promise that I won't be sick on that day, and they just kept repeating themselves, and I was finally just like, "I don't understand, what am I supposed to do???"

And finally, they tell me that if I can't make it on time day of, I shouldn't show up. That I should call and cancel my attendance, and that if I cancel twice I won't be allowed to remain in the program. Okay!!! I mean, shitty, but okay! Now that is a concrete thing I can work with, why didn't someone just say that instead of repeating over and over that I have to be there on time, something that is not within my control???

I said nobody told me that, but they didn't respond. They just kept talking about how the program is strict, blah blah, and at this point I just said, "Okay, then I just won't do it right now, maybe I'll be better next year and I can do it then." I wanted this to be over with, and that seemed like the way out. And they were still talking at this point, but I don't remember what they were saying anymore because by now I'd started sobbing again and I felt so defeated and just wanted to leave. I needed to leave right now.

I just got up and sobbed that I needed to go home now because I was too tired and shaky and I couldn't handle anymore, and I started to walk out of the office. I've never walked out on a doctor in mid-sentence before, but I just couldn't handle another minute of being treated like I was intentionally breaking some kind of rules or being difficult or doing something wrong. I felt like a child being reprimanded for something I hadn't even done yet. There was not a hint of empathy for me either as a chronically ill person trying to seek medical care, nor for what I'd been (unnecessarily) put through emotionally. As I left, my doctor still sounded irritated, but asked if someone could call me later in the week, and I said fine, but at that point I truly didn't care anymore and was already on my way back down the hall.

The aftermath

I sobbed my way back down the long hallway, out of the clinic, and into the car, where I shivered my way home, drenched in sweat and completely exhausted emotionally and physically. I sat in silence, and when we got home, I had a shower and put on comfy clothes, and curled up with tea and my heating pad, and tried to forget it all by watching a million more episodes of Party of Five on Netflix.

I know that medical appointments can't always be unhurried, and that medical services have rules (some more necessary than others). But COME ON. Dealing with a patient, who they have known from the moment my referral came in has complex and severe health issues, and who is physically and emotionally fragile (it's in my file for godsake!), whose health issues are severely exacerbated by stress... there is no excuse for how I was treated! Stress and additional trauma is exactly what I went through today, for no good reason - and it could either take me days or weeks or months to recover from, depending on whether it just exhausts me, or sparks or worsens a flare up. These are the people who are supposed to specialize in dealing with people like me - women in pain with complex health issues and histories of trauma. But the way I was dealt with took me from being hopeful and trying my best to being a "good" patient to feeling completely shamed, dehumanized, judged, and written off for being too sick to fit into their neat and tidy boxes.

The only comfort I left with is that I got confirmation that I likely don't have endometriosis. To me that means that if I don't want to, I don't have to go back there. I can always find a private pelvic physio and specialized counsellor later on when I have more energy. Luckily, when you pay out of pocket, nobody is going to give you shit and deny you care for being too sick to make promises you can't keep. They just charge you a missed appointment fee and let you go on feeling like a respectable person.

The biggest irony is that it's the people with the most complex health issues, who can't work because of their illness (and hence really need publicly funded care), who end up not being able to access care because of their illness.

It's supremely fucked up, the whole thing. And I'm yet again extremely disappointed, left without the care I need and deserve, and recovering from an exhausting, traumatic medical care experience - one that really didn't need to go the way it did if the people there could have had an ounce of compassion for what I'm going through.