Unmet needs: why we're afraid to talk to our doctors

 

This is a Facebook comment that I want to turn into a blog post, because these are important issues, and I assume I am hardly the only one who is struggling. It's an unpopular view about which hardly anyone speaks, and I think this is due to guilt, shame and being intimidated by the labyrinthine nature of the medical system right now. It causes more stress than it solves, so I try to avoid it as much as I can, and avoiding medical issues and hoping they will go away is NOT a good strategy over the long haul - and I don't even think we're at the midpoint yet. I normally use a lot of images to break up text, but this is going down as is. 

I have one of those phoned-in "doctor's appointments" scheduled in a few minutes and am waiting by the phone with my stomach in knots, though I was told the call could come any time between 8:00 am and 5:00 pm. 

I am dreading it. After six months, I have so many unaddressed issues built up that I don't trust myself NOT to spill them, become angry and alienate the only source of help I have right now. She has a history of discounting and countering virtually everything I say. Medication is also a huge problem, and based on past experience I fear she will withhold some things in a way that "shouldn't bother me" because it didn't bother anyone else she has treated. 

I am being told, not WHAT to feel, but the only way TO feel, because, surprise surprise, there's a pandemic on and we're made to feel very guilty and even shamed for having medical needs that have gone unmet for half a year (and most of this stuff has been going on for 2 years or so while I have actively searched for a better doctor). 

In my case, it's psychiatric, so I virtually don't have a leg to stand on, and based on 50 years of dismal experience, this almost cannot go well. Everyone has their own bag of bricks to lug around, and each one is different, but I have been trying very hard to convince myself that this stuff isn't important, and I should just be a big girl and suck it up. That is the impression I get, anyway. 

I try to keep negative medical things off my Facebook page because it is NOT a popular view to criticize doctors, who have been lifted up to the status of selfless heroes when many of them are just not doing their regular jobs and are leaving people (not just me) with no safety net, which is considered some kind of indulgence, I think. My main hope is that she will have an anonymous intern handle it, which she has frequently done over the past two years. My encounters with her, though rare, are incredibly stressful and leave me feeling drained and discounted. And I can't "just get another doctor", so that door is closed to me. 

Wish me luck, please.

Surgery without anaesthetic? It happened to me

This was going to be tacked on to my last post  about my hatred and dread of doctors,  but it  began to spill out of me dreadfully today and I couldn't make it stop. I just hope I don't lose followers, as I did last  time I expressed anything really painful.  Only celebrities can "admit" to  traumatic experiences like this and get a readership spike. The rest of us, apparently, get the opposite.

On Monday night I got a call, out of the blue, during supper, that I had to have a "consultation  with a surgeon" (?) on WEDNESDAY, and to do my "cleanout" tomorrow. Cleanout? Oh yes, for the colonoscopy. (But nobody told me I had to -) Which  was on Wednesday, the day after tomorrow - two days, what, what?  - followed by "the surgery". I was completely unable to take any of this in, because it was said by a receptionist who talked very very  fast and was obviously at the end of her shift. When I began to ask desperate questions, the putdown vocal tone and "calm down now!" attitude immediately kicked in. Only when I asked her for clarification did she email me colonoscopy "prep" notes, but nothing more, except a  time and place.

The prep is better not talked about, not something for family viewing anyway, but it left me in a lot of pain in a very vulnerable area. In the hospital I was "prepped" for the procedure by a mechanically cheery nurse whom I heard say the exact same things to patients on the other side of the hospital curtain. The "surgeon", whom I had never met in my life before and whom I could not see because they had taken my glasses away, rattled on about "if I can do the procedure" (If?. . .  Procedure?), then I was pushed into the next room. I was hooked up to an IV, so I assumed it would  be like the last time I had one of these: I'd lie on my side, they'd turn on the juice, and it would be "bye-bye- land" until it was done.

Except.

There was none. 

No. None. NO ANAESTHETIC for the colonoscopy - I was awake and conscious for the entire 45-minute thing, which was like being  assaulted by a roto-rooter. At one point I began screaming - the pain was approaching the level of childbirth as the probe with the camera on the end punched and twisted and jabbed at the turns and folds inside my colon, and the nurse kept on telling me to keep quiet because I was disturbing the other patients. I asked why I was awake,  and I was told, in  a slightly indulgent, sighing tone, "Dr. So-and-so doubled the dose of pain medication," no doubt a ploy to get me to subside because I was making too much of a fuss. In other words, if you've had all that pain medication, you can't have any pain, so what are you complaining about?  But I was awake, and in extreme pain, and no one would explain anything to me as to WHY this needed to happen.  Nor was there any sense of apology for hurting me. Getting someone to listen was impossible.

After the "procedure", everyone rapidly exited the room and left me completely alone. No one asked me how I was doing (horrible) or if it still hurt (which it did, a lot, though today it is MUCH worse and at least a 7 or 8 out of 10). Nobody said anything at all because there was no one there. They just left, with no explanation of anything they had done, or why. Then my husband took me home. I was too dazed even to cry, although I don't remember feeling  this deeply violated in many, many years.

When my husband recently had his prostate surgery, he was treated like a king. His urologist spent 45 minutes with him carefully explaining what they were going to be doing (and he had several weeks of lead  time  to prepare himself emotionally). He was given a FIFTY-PAGE document to read outlining the procedure, including every conceivable outcome from best to worst, so he wouldn't have to face any surprises. The feeling was that "men feel awfully vulnerable about things like this, it's their manhood after all, so they need lots of reassurance," which he got - in spades, from the family as well as the medical support team.

After the surgery, he spent the night in a quiet, beautiful room that even had a restful view. I remember him telling me the food was great. When he got home the next day, the entire family pitched in to help, and there were many solicitous emails flying  back and forth - and they are STILL constantly asking him how he is, weeks later, though his recovery was textbook, he experienced no pain at all (he was given an epidural, which means he felt nothing below the waist), and is back to normal now. While I can't sit down because of the inflamed, toothachey sensation in my unmentionable parts, and keep getting waves of uncontrollable, deep shuddering that I know is the awakening of a very old trauma.

I am an older woman, I have had  psychiatric and addiction problems in the past, and I was deeply violated, including sexually violated, in the hospital system over and over again, but whenever I express the view that the medical community treats me with dismissal or even contempt because of that bottom-of-the-barrel status, I am met with eye-rolls, sighs and shaking heads (followed by walking away). How on earth could I even THINK this would affect the professionalism of the medical community, which is always completely impartial and  treats everyone with equal respect?

One doctor I had seen for fifteen years insisted that the medical community had nothing to do with my perception of mistreatment and that I "stigmatize myself". Doctors "would never" do anything so harmful to anyone, and "people like me" are never treated any differently, they're really quite tolerant of those kinds of things, so I had better "work on my attitude".

Apparently, nothing can or will be done about this, because in their minds,  nothing happened.  It's done, and I am in extreme pain. I can't talk about it either, it's too embarrassing and no one is interested, and even writing this now is a risk. I don't feel good about it, but I ask myself why I even write, if I must censor myself so carefully about things that affect me so profoundly. 

I know that nerve damage, which is what this feels like, may well be permanent. Doing a colonoscopy without anaesthetic means the body is tense, the muscles are tight, and the pain made me involuntarily thrash, though I could  vaguely see (without my glasses) two figures holding me down, one on either side, while she "did it". I could NOT "just hold still, it'll be over in a minute", said to me in exasperated  "we've got another one" end-of-shift tones. The best image I could conjure up was of a bad dog at the vet.

I was only to find out later that there was also a surgical procedure done, surgery without anaesthetic, because it was easier for her to do this (and FASTER - I think the main thing was that she could get out of there quickly) while I was fully conscious. I kept thinking of the dentist's scene in The Boys from Brazil, and I keep wondering - some dark, hidden, wounded part of me keeps wondering - why? Well, why did ANY of it happen anyway, my past which apparently cemented me into  a marginalized, silenced, powerless category from which there is no escape except death?

And why the sighing, the eye-rolling, the "we've got another one" attitude when I screamed out in pain? I don't remember pain like  that, ever, except perhaps in childbirth, or being sexually  assaulted over and over which also happened - but we don't write  about that, do we, or  express it, you must just keep it to yourself because it's "not nice", it's "nasty", I'm meant to deal with it like a mature person on my own, and besides, it "probably didn't happen anyway".

But this did.

This. Did.

Riverview: you mean it's for mental health?

Riverview Lands revisioning to include new mental health buildings

Three programs will be relocated to two new buildings under a revisioning plan for the lands

CBC News Posted: Dec 17, 2015 2:26 PM PT Last Updated: Dec 17, 2015 2:26 PM PT

Fraser Health currently operates three mental health facilities on the Riverview Lands. (CBC)

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The B.C. government says it plans to build two new buildings on the Riverview Lands in Coquitlam and relocate three mental health programs to the site, as part of its redevelopment.

The new facilities are part of a master plan released Thursday morning by B.C. Housing that will eventually include new market and social housing on the site.

Entitled A Vision for Renewing Riverview Lands, the report is the first step in developing a master development plan that will include a healthcare district as well as market and supportive housing.

The overall aim of the project is to redevelop the site on a break-even model, meaning that the construction or renovation of new healthcare facilities would be funded by commercial development of the land, mostly for housing.

The commitment includes spending approximately $175 million to build a 105-bed mental health facility to replace the Burnaby Centre for Mental Health and Addiction, and a second new building to house the 28-bed Maples Adolescent Treatment Centre and the 10-bed Provincial Assessment Centre.

The Kwikwetlen First Nation has maintained its aboriginal right and title to the land. In a statement, the band said it expects to see significant market development of the land, including for market housing and it objected to any continued use or expansion of healthcare facilities without its prior consent.
100 years of mental health care

The Riverview Lands have been the site of B.C.'s primary mental health facilities for about 100 years when the Colony Farm was established.

But in the 1980s, the Social Credit government came up with a plan to close Riverview and attempt to integrate mental health patients back into communities.





Riverview Hospital was downsized over the course of a decade in favour of locating mental health services in the community, a strategy that met with mixed success. (coqutlam.ca)

While that plan met with mixed success, over the next few decades the hospital wards were shutdown and now the site has been sitting mostly empty — except for three small mental health facilitiesoperated by Fraser Health.

About 75 buildings remain on the site, but many are not longer in use and would require extensive renovations to put back into use.
Riverview Hospital: a brief history

Riverview is listed in the top ten of Canada's most endangered heritage sites by the Heritage Canada Foundation.

As a result in 2013 the government, in order to involve the stakeholders in developing a long-term plan, launched the revisioning process for the 100-hectare site, which includes extensive forests and 1,800 mature trees.

BLOGGER'S LAMENT. This is just the most bizarre thing. Riverview originally began as an old-fashioned mental hospital, the type with shackles and shock and cold water, then when psychiatry became more "enlightened" it basically dumped everyone out on the street and said, "Go!" These patients were supposed to be sustained by "resources in the community" which turned out to be non-existent. The result was an epidemic of homelessness and drug dependency.

On the plus side, the Riverview grounds became a lucrative site for the filming of horror movies and made quite a name for itself, no doubt reinforcing a few stereotypes along the way. These plans to turn Riverview BACK into a mental health facility make me either want to laugh, or cry, or both. Nor is there any admission of wrongdoing - in fact, the tone of this article is quite self-congratulatory. The most they will admit to is "mixed success" with their patient-dumping scheme, when everyone in the health care field (who has the guts to be honest) calls it an unmitigated disaster. But no: the article has the tone of "look at this wonderful thing we're doing for the mental health care community!" But I'm afraid the new buildings won't be quite creepy enough to film another Stephen King movie.

I do remember the sign that was posted outside the gloomy old grounds, Riverview's "Mission Statement": "Transforming mental illness into mental wellness." Crap. I say crap because this is the kind of assumption that actually hurts psychiatric patients. It's an assumption that everyone can be "normalized", that everyone is fully employable and capable of a productive, happy life on society's restrictive, narrow, judgemental terms. Not many schizophrenics ever reach that goal, and for a person with  bipolar disorder it's hit-or-miss.

So is this a step forward? Step in the right direction? It was not long ago there was talk that the historic Riverview grounds which everyone babbles so proudly about was going to be sold to developers for yet another mass of condos. But it didn't happen, maybe because of all those Stephen King movies, or the thought that (shudder) "mental patients" had once walked these grounds in the dead of the night.

In case you doubt me, I've written more than once about mental patient Halloween costumes complete with straitjackets, giant syringes and Hannibal Lector-style face masks. "Danger! Escaped mental patient!" is a common front-yard sign to celebrate this festive occasion. Pretty funny stuff, so long as people only have to play at it.

I watched my brother disappear into a twilight world in the 1970s, and we never really saw him again, or saw him whole. Bouts in the Clarke Institute in Toronto seemed to do more harm than good. Finally, my brilliant, charming, charismatic brother died in a fire, the result of having to squat  in an old building because he wasn't able to support himself, though he was a very gifted musician who played in professional orchestras when he was well enough.

But he wasn't well enough, most of the time. He wasn't fully employable, and he lived hand-to-mouth, sheltered in Buddhist and Sikh temples by the only people who ever showed him any compassion. He wasn't well enough because schizophrenia is a chronic illness that can be managed but not cured, and he had little or no resources to manage it.

I lost him in  1980, the year John Lennon died. I now see that the psychiatric "community", as it is euphemistically known, did him far more harm than good. They labelled him "a schizophrenic", and because identity was a difficult thing for him, he took the label on and lived within it while we all helplessly watched.

So for this, and countless other reasons, I continue to write about this subject. If you think mental illness isn't stigmatized, try having it for ONE day.  You'll either feel it from the outside, or the inside. You'll wince at straitjacket costumes and horror movies filmed on grounds that once tried to do some good, with actors in mental patient costumes running around with bloody axes.

I wonder, sometimes, if it's ever going to be any different. If I hear about this subject at all, four words are always blasted at me: REACH OUT FOR HELP.  What help - where? Do people think you can just walk into the hospital and say, "Help me"? You can't check yourself in, folks. Even your doctor can't check you in. No one can, because there are never any beds. After a four or five-hour wait, they'll likely send you home with a prescription. Kind of a waste of energy, don't you think?

The "reach out for help" mantra dumps responsibility for illness and recovery back in the patient's lap at a time when he or she can barely function. Friends and family members get burned out and often don't want yet another (complaining?) phone call in the middle of the night. Nobody thinks about that, do they? So where IS the help, if there is any?

But never mind, there is a certain agency that takes care of the overflow. I don't think I need to tell you what that is.

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