Thursday, October 20, 2011

Doctor Phobia: Do I have PTSD, Panic Attacks, or just an acquired phobia to MD's?

I can’t sleep the night before a doctor’s appointment. Not anymore. And I get snarky, twitchy, and scared almost a week before a specialists appointment. On the day I don't want to leave the bed, don't want to dress or get ready for the trip.
When I get to the medical office, I try to calm down with listening to music but my mouth is dry, my heart is racing, and I feel like it is bursting through my chest. I feel like there are fingers ripping open my rib cage, and have a hard time getting a breath. The more I try to focus, the worse those feelings get. I know that I am having a panic attack, and yet I try to say nothing to anyone, for the same reason I can’t sleep the night before….

Because I know it would be used against me.

I have nightmares about missing finals and how I can’t find my classroom but I wonder how much of that is about the OTHER type of tests: medical tests. Like a final, I will have a short period of time, sometimes only a minute or two in which I will be given a question by the doctor to which I need to have the perfect answer. And I never seem to get it right.

“I am tired of wasting my time.” My GP says, and walks out. “Stupid” is the most common phrase he uses for me. He tells me my questions are ‘time wasters’, ‘Stupid’, ‘Idiotic’ and yet, he is one of the better GP’s I have had. The closest he has come to saying something nice was one question he said, “Now THAT question was a GOOD question.” (Gee, what would that make every other question I have asked him?). Linda said outside, “Did you notice how much he like you.” No. I feel too much like throwing up after a doctors appointment from the fear, and the adrenaline in my veins to feel anything other than, “Please let me never have to do that again!”

I ask doctors questions because I don’t know why things happen. When the side of my colon fell over my anus blocking it and he put me on a softener and other products, I asked, “Will the colon fix itself, and why did that happen?” This, I was told, was a stupid question. Linda thought he probably didn’t know the answer.

I’ve noticed that the more the doctor doesn’t know the answer, the more they attack me. And with my disease, they don’t know a lot of answers. Ergo, I am always the problem.

To me, if my anus is blocked, this is considered BAD. I want to know why, so I don’t have to go to a doctor again, and to get an X-ray again for a blocked anus. I don’t want to tell the X-ray tech, who is cute and looks like California, that I am here to check for anus blockage and constipation. It kills the romance fast. There aren’t a lot of anus jokes which can be used as pick up lines (though MANY men have tried, trust me).

I have been told that I am lying, that I am delusional, that I am suffering from trauma from my childhood, that because I take medicine for depression I used to have, I am making this all up. I have been told that what I say isn’t possible, and the most common reaction of a doctor seems to be to ask my partner, “Is she lying?” No.

I have been told that I want the attention, or that I subconsciously want the attention and that it isn’t my fault, but I need to go to a mental asylum. Or that it is my fault. Or that they need to run the blood tests again.

I have been told that my blood tests must be wrong. The MRI must be wrong. That the conduction test must be wrong. That the CT must be wrong. Then I am told that the notation, “Indication of an adrenal tumor” on the blood test isn’t relevant. That the 40% of the blood test which showed up with star by it and bold with ‘GP, address then or refer to specialist’ note on it, isn’t important. I’ve been told that I haven’t had an infarction because the blood test shows there is no damage to muscle. I have been told that the result showing the massive damage to muscle is likely from me bumping into a table. When the damage increases and is in bold and ‘urgent’, I have been told that it ‘isn’t important’. I have been told that I am at fault because I let my B-12 get too low. I have been told that my B-12 is irrelevant. That anemia isn’t relevant. I have been told that if I had fatigue, how could I be in the doctors office.

I have been told that I look too good to be sick. I look too animated to be in pain. I have been told that purple fingers come from florescent lights, not lack of oxygen. I have been told that even though my nerves are dying, and have an auto-immune disease, I am probably ‘faking’ the level of my autoimmune disease, though no one knows WHAT disease it is yet.

Jazz at Fighting the Fibro visited a pain doctor. He treated her like shit. She still managed to make sane, logical arguements. My pain doctor said, "Hmmm, you don't exercise." After finding out I did he said, "You are too complex to treat." I didn't have anyone even try to treat my pain for the next 2.5 years.

I've had a male doctor tell me I'm not masturbating correctly (no, I'm not kidding). And then want to follow up about it. I always thought, "If I orgasm, and don't use any gardening tools, then that's good." No, not good enough.

I have nightmares about doctors because doctors hurt me. They hurt me emotionally, and psychologically. They hurt me physically, they grab me, they leave bruises on me. The idea that I go to a respite where any doctor can walk in at any time and do anything to me is beyond terror. Having a room where I can’t lock the door with doctors around terrifies me.
Several people told me about how they developed needle phobia after a bad incident with a needle (one where the nurses tried 16 times without success). I have had dozens and dozens of doctors conduct, supervise, oversee, evaluate and manipulate both me and the results of the hundreds of tests I have had. One doctor told me that ‘I don’t need tests to tell you have pseudo seizures, regardless of what the ER neurologist said, and I don’t treat pseudo seizures. This will probably be the last time you see me.’ He sent me for a single 1 hour black and white flash test, which produced no seizures. I wasn’t scheduled back, and ended up getting meds from the seizure specialist in the ER.

I am fatigued of crying from the abuse of the white coats. I am tired of the two days of nightmares BEFORE I go, and the three days of nightmares AFTER I go.

I think I have Post Traumatic Stress from the trauma of the doctors who have often judged me and found me wanting even before I saw them. “X talked to me, when they heard you were seeing me. So, I know ALL about YOU.” Once specialist told me at the start of the meeting. This wasn’t even the man who hated me, told me so, but added in all seriousness that if anyone wanted to do anything to my heart, he really wanted to do the cutting.

Like a gal who seems to pick the 'hit me' type of boyfriends, I have started many doctor relationships with good hopes. But then the 'Do it and shut up' soon starts. And after that it is 'Do it or else' In our Province you can go the CPS, and see how many doctors in your neighborhood just got requirements to have a female in the room due to the multiple number of rapes or sexual abuses. No, the doctor doesn't go to jail. And it has to be more than just one, but the college won't tell me the magic number of cases before they go from being published with a line about 'complaints of abuse' in a doctor only publication until they are listed on this board.

One doctor told me they wouldn’t touch me at ALL, because I made him uncomfortable. Another doctor wanted to know why I got into the sex trade. Seriously. His apology was, "Oh, or was it exotic dancer." A DIFFERENT doctor sent me for monthly HIV tests. One doctor refused to treat me anymore unless I consented to a double mastectomy. Could I do that at a sandwich shop? Could I do that to the doctor’s family? Ask his daughter when she chose to be in an escort service? Or would that be out of line? One doctor said they wouldn’t see me in their office, but they would consent to examine me in the parking lot.

What is the cure for Doctor Phobia? And am I the only one who has it?


Linda McClung said...

You have had so much crap thrown at you from the medical profession over the years. It is no wonder seeing one is a traumatic experience - before, during and after.

I dread you needing to go to the appointments as it really messes with your mind and causes so much distress. I keep hoping that maybe the next one will be better. And occasionally they are better than the previous one, but it is all relative.

I can see why the idea of going on a respite in a hospital where doctors do rounds would terrify you. We will find a more restful alternative for you.

I admire your courage every time you make it out of your bed, out of the apartment and into the doctor's office.

Displaced said...

There is a book in that blog alone! A funny and tragic book because the absurdity of truth is both hilarious and heartbreaking.
You aren't alone - I think most of us with chronic problems are pretty skittish about the doctor.

Penelope said...

My shrink and I established that I have doctor-induced PTSD. Mine's not as bad as yours, but my experiences haven't been as bad as yours. (Or, at least, after the 10+ years it took to get a diagnosis, they got better fast, but it's still there.)

I wish I had some good advice, but really it's taken me many hours with a good shrink (who has backed me up from day one that despite the fact that I was referred to her for conversion disorder, I don't have it, but I see her to deal with coping with having a chronic illness and for dealing with things like the doctor-caused PTSD).


Neil said...

Dear gods, it would take someone as caring as most of your fans here, WITH an extensive list of medical degrees, to be able to answer the question in the title today.

Frankly, I would be surprised if you DIDN'T have some lingering trauma from your childhood. But I'm speaking from "common sense" rather than medical experience. PTSD would be one possible diagnosis for your childhood-induced conditioning.

As for the doctors, well, you can certainly acquire a fear of them; when all you get is poor treatment and human rights abuses, yeah, I can see a phobia starting. Panic attacks too.

When a doctor says s/he knows ALL about you, perhaps you cold counter with, "Did your source tell you that I was a University English professor, and might have been almost good enough at epee to get to the Olympics? That I have travelled the world, and been amazed at architecture from here to Japan to Venice?" Well, you get the picture; and can probably add a few more positive images from your past.

Beth, my dear friend, I assume there's a doctor's appointment in your near future. Thus, I will meditate on your behalf, send the very best positive energy and prayers that I can, and I encourage everyone reading to do the same. We're all on your side, and we will absorb the demons that haunt you before and after your appointments. It'll be like the force (from Star Wars),and how I WISH that force were real!

Do you have some sort of mantra or meditation that might help you stay calm(er)? Or at least less panicked?

Displaced: I agree with you: Beth's entire blog should be mandatory reading for every medical student. Maybe it would help create fewer bad doctors.

Love and zen hugs, Beth, and Linda too!

GirlWithTheCane said...

Your doctors are assholes. I want to cry for what you go through, Beth...I wish that there was some way that I could help.

Baba Yaga said...

You're certainly not the only one who has it. I have the odd medical horror story; but it's not the hrror stories, it's the consistency of having autonomy and validity-of-existence removed from one.

They use the fear of them against one, too.

And the entirely *obvious* concept of retraumatisation doesn't cover anything they do, however cruel.

Sorry to say nothing more cogent. I'm sorry you suffer this, sorry you have to go to them anyway...

Elizabeth McClung said...

I do try to use journal articles, medical sources, and make sure I present a case but often, the answers I get for asking 'Why?', or 'I thought X was the standard' is through a haze of abusive behavior, or discriminatory, like a drop-in clinic where the two women there treat me on the sly, as they are not allowed to keep any record of me at all, because I asked a 'why' question of the male doctor, who was the owner (in 4 hours a week), and while he can't QUITE ban me from a open walk in clinic, he can order that I not be referred for tests, bloodwork, specialist, etc. Wow, so different than high school - maybe this is part of the 'It gets better' message I hear about.

Yes: conversion, conversion, conversion! It is when the doctor was trying to say that stress, being female and PTSD create conversion issues for my heart, so we showed the strips from the hospital where the ventricals stop working, and I flatlined. I didn't get a referral, and the conversation ended abruptly but at least he wasn't advocating they take my 'mental crutches' away anymore like Oxygen, heart pills, etc.

It is nice to know there are good doctors in Canada, just odd they all seem to be 3,000 miles from here. haha. No, I guess there are good ones in Van probably.

Stephanie said...

Hi Elizabeth! I was surprised and pleased to see your comment on my blog about stories. Thanks for reading! It was good to hear from you. =)

I think in your case it's no wonder you're anxious about doctors. It's not like they've been treating you well. :/ Goodness, sometimes reading your blog makes me wonder what doctors are good for.

Neil said...

Oh, right; you're female. Well, THERE'S your problem!

Okay, sarcasm mode set to OFF.

Really, YOU shouldn't have to do the doctors' work for them; they get paid a bloody good salary for seeing you, and they're supposed to be the ones with the knowledge. Lazy, that's what they are.

I hope you have a good night's sleep, dear; with no nightmares or undue pain.

Love and zen hugs,

Kate J said...

A doctor should never call his (or her... but I'll bet it's usually 'his') patient an idiot, or say they are stupid. Even if they are. Which you are obviously not. And as for suggesting you are a sex-worker... the logic of this is beyond me, I'm afraid.

I wonder if any of your 'doctors' or 'carers' read your blog? I reckon they should, if only to see how you can turn their stupid (term chosen carefully here) comments, crass assumptions, homophobia, cruelty, general ignorance and lack of empathy into a bitter, angry, utterly coherent (and sometimes even witty) commentary on the practice of medicine in the 21st century.

It'd be funny if it weren't so damn tragic.

I wish you lots more days where you climb a peak, visit a beautiful provincial park, feed the squirrels, visit the kitties, tour a craft market, enjoy an ice-cream or a hot chocolate, see wonderful movies, listen to great music, spend quality time with Linda.

The sun is shining outside. It's a beautiful autumn day here in Wales. I'm hoping to spend some time in my garden, somewhat half-heartedly pulling up weeds... half-heartedly because I admire those weeds, for their resilience, their strength, and often their beauty too. They never give up.

Love & peace

Anonymous said...

no beth you arent the only one.. any disabled person comes to a point where you develop a me vs them mentality. They do things that hurt and will not say why or even acknowledge you. Its like your not there wearing a flesh suit they get to play with..
I'm sure there are good medical folks out there.. but oy are they hard to find..

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D. Emerson Evans said...

I think part of the problem in general is the way that we as a society perceive the medical porfession. Medicine is constructed (at least in North America; I can't vouch for the rest of the world) as a prestigious "scientific" pursuit, and therefore immediately gendered "masculine," in the hegemonic sense. It tends therefore to attract entirely the wrong sorts of people: concerned with their own prestige and success, prone to clinical detachment, and with a tendency towards elitism. If the medical profession was constructed as a "caregiving" profession, rather then a "scientific" one, chances are it would be more closely associated with nurturing, compassion, and empathy.

Granted, this is a sweeping generalization, but I have an instinctual feeling that your situation is an extreme example of a general trend that, while not true in all cases, certainly seems prevalent. It is frustrating to think of how difficult that paradigm is going to be to shift.

Raccoon said...

You aren't the only one: was the very first link I found.

From all that you said before, I knew that medical care where you live is slipshod, at best. Some of your descriptions here describe abusive, if not downright criminal, actions.

At least making a book out of the blog won't be very difficult. One entry per chapter… Would/should it include comments? Pictures, of course. Hrm. Would copyright permission be needed for the anime, or just acknowledgment of the artists? said...

You are not the only one.

I was lucky enough before coming to the Midwest to have decent medical care, and I was still terrified of doctors. Now that I'm here, and everyone has so much control over me and so little control over my pain, now that I've experienced what it's like to be ignored into opiate withdrawal, to have to spent hundreds of dollars to fly to another state and get care because no one in my state would do it, it's so much worse. Some day I will get up the courage to write about what a pain doctor did to me, and how terrible he was, but right now I can't go into it for fear of a total panic attack. Today has already been so painful, I can't risk triggering the panic and more pain.

*Triggering things to follow*

My pain is in my pelvis, and every time I go to the gynecologist, it feels like rape. It feels like she's hurting me just to hurt me, and I can't let my partner touch me there for days. And I came from a good place around doctors. My mother is a gyno. I love womens' health centers. I have sat and wept throughout many doctors appointments, and had doctors (especially surgeons) ignore me or shout and rage because I can't hold it together while they hurt me. I have had pain doctors tell me they're stopping my medication with no plan to treat my pain. I've had them suggest weight lifting and reiki and trigger point injections and anything that means they don't have to risk themselves to help me.

So this pain "pain doctor" (I later found out he is actually a plastic surgeon, and has no education in pain medicine), part of what he did to me was to tell me he didn't prescribe my painkillers, and that I was lucky I hadn't been arrested yet. Then he told me he didn't believe I was in pain. Then he pushed a prescription into my hand as I was leaving. I looked down, and it was the wrong dose of my meds, the ones he said he wouldn't give me. I asked "what is this?" and he rolled his eyes and left. In his waiting room there were people pacing and crying and shouting, talking to one another about their fear of going into withdrawal. There was a man bleeding on the floor, and another man who had just come out of surgery in the clinic who was drugged and bandaged and recorvering IN THE WAITING ROOM. So no. You are by no means the only one.

cheryl g said...

To answer the question posed in the title I would say you have all of the above and for good reason. You have been treated badly and been outright abused by the medical profession repeatedly.

I hate how adversarial the doctor patient relationship is. I remember when I was in med school we were constantly lectured about staying detached and we were warned that most patients were attention seekers or worse. That was one reason I left medicine for a different careeer path. I didn't like the doctrine of infallibility and complete control. I didn't understand why helping people had to take a secondary role to ego and expedience.

Neil said...

We're recuperating from organizing, cooking for, and cleaning up after a medieval feast yesterday. My Beloved decided that it was to be a Welsh/Cornish Wreckers Ball. She had to cook for 65 people, and it took three hours to clean up afterwards. But it was worth it! (No, it was NOT eaten without cutlery: spoons were invented before knives, and forks were used during the Roman Empire, though it took until 1608 for them to appear on English tables. And nobody threw food in the Middle Ages, because they couldn't afford to waste food, and the potential target was probably armed - certainly with a knife. The knife also helped people with their manners, I'm sure.)

I thought of you during the evening, Beth, and I hope you're getting some decent, pain-free rest.

Love and zen hugs,

Valerya said...

This is just wrong. So wrong. I never thought that people who study 8 years to work their asses off afterwards could treat a patient like this.

Reading that post just made me so furious and sorry for you, for having to endure all that...

And her, cynicism aside - There must be good doctors somewhere. And I know it sounds mad, but - Since you depend on so many doctors for your treatment, is it possible for you to actually move-in to another part of Canada?

Are there any forums or sites with doctor reviews on them at your area or for one of your diseases?
I know there are on a Fibro\CFS forum I was in, and that's what saved me a lot of wasted time and energy in finding a good one. I might've actually given-up on being diagnosed at all...

Kathz said...

I can get pretty nervous of doctors after a couple of bad experiences, even though I've also encountered doctors who I like.

I wish doctors like the ones you have encountered could just begin to understand the effect they have. And I wish you could find better help, treatment and care.

I wish I could think of something more useful to say. As it is I just send love and hugs.

Jazz said...

excuse me for this please, but HOLY FUCKING SHIT.

I'm with you on the abuses in the medical system, I have my share of nightmares. My only defense has been my mouthiness and inability to shut the hell up when treated like crap.

Problem is, sometimes I am not well enough to fight back, and that's when things get interesting (and depressing).

Oh, I feel for you. Deeply- to the depths of my being.

I wish I knew how to make this better...I have considered using the record function on my iPhone for my doctor appointments, just to prove to someone else that I'm telling the truth- it really is that bad.

You would think that documenting it all and then raising a stink would help, but who are you/we gonna tell? The College of Physicians and Surgeons does NOTHING. There is no recourse.

I have a saying I use again and again about bullies of all stripes: THEY DO IT BECAUSE THEY CAN.

Oh, there has got to be another way to make this better... we have to find a way...

Anonymous said...

I have doctor-induced PTSD. Most of them are arrogant, ignorant, hateful monsters. I have been physically and mentally tortured by them and am permanently disabled due to medical negligence. I can hardly leave my home, and it's likely that I'll soon die. I'm trapped in a socialized medical system, and it is impossible for any of them to be fired. Under penalty of imprisonment, you're forced to pay the salaries of your abusers. It's beyond fcked up and horrific. It a sick sick abuse of human rights. As hard as it is, please keep sharing your story. We who are sick and who have been tortured need to tell our stories so someday someone might listen. Otherwise, the devils will continue to freely torture and kill. In this socialized system, they can literally kill you and still they keep their jobs. Disgusting. They and the politicians can all burn in hell.

Peace and love to all who persevere.