Treated like a Criminal for Being in Pain? Got Mental Illness, too?: Psychiatry’s Fetish With “Dual Diagnosis”
I’ve been bleeding for eleven days now.
I am sick and tired. My endometriosis is getting worse just as it did last winter. Each period is more painful, and I’m driven a little batty this time, by my family’s reaction to the fact that I control the pain with hydromorphone (Dilaudid). She’s bipolar and she’s taking potentially addictive medication.
Though I determined last week that there was no way that the year was going to end with me playing Tori’s “”Pretty Good Year”, as the last one did, this week, I though had a pretty good period, as day four of twenty-eight turned to day five of twenty-eight and the pain I experience during my ” ” – compared with that of childbirth by many, due to endometriosis, and now, my doctor believes, perhaps other abnormalities in my blood – was ceasing already! Usually it lasts for eight or nine days. Day nine was the day of my stepgrandmother’s funeral, and in the middle of the service, I felt the thunder after the bolt of blood that had strangely come out earlier in the morning.
I had been pretty wrong. Evidently, things were only just getting started!
I am also sick and tired of being treated like a criminal for being in excruciating pain. It’s such an excellent time, too, to be treated as such. By your family. By a walk-in clinic doctor, by a receptionist. You can hardly walk as you grasp your lower abdomen. Tears eventually come, the shakes, pain radiates and numbs our legs. Should I stretch out or go for the fetal posion, that is the question? The only question, as the pain is all you can think about. As you can tell, I like to ask a lot of questions, and ones that are much more complicated than about how to position my body!
I panicked. What if more blood came, what if it came in ceaseless waves, down the elavator shaft,
Twin girls bleeding, my self, split into two.
My uterus is a giant appendix. I am highly evolved. The world is overpopulated. 30,000 children starve to death each week. Some equilibrium must be established. What if it ruptures? Pow!
K. and I departed the bible town of Steinbach, where the funeral for the devoutly Evangenllical woman was held (no, my family is very much agnostic, and even daddy started laughing when the name “Jesus” was mentioned about 10 times in one sentence to head back for Winnipeg. Destination 1: Four Rivers Medical Clinic. Here, as I describe my “reason for visiting” to the receptionist at the desk. Waiting to have a hysterectomy at age 26. A sudden event. Fear. The Loathing is obvious and mentioning it would be overkill. She looks earnestly concerned and I actually expect the doctor I will see, at this same place where I was diagnosed with bronchitis simply by answering “green”, when asked what colour my spit-up was.
A young woman doctor enters the room, she seems swift, I cannot forgive myself for having hope, nor can I rid myself of it. I repeat my symptomatology.
“Okay, take off your bottom parts and cover yourself with the sheet and I’ll be right back.”
I’m all too familiar with this rigamarole, with fact that this paper sheet serves absolutely no purpose, but to allow the doctor to go see another patient and turn them back out so that the assembly line may function properly. Patient in, (character?) judgment made, prescription written or not written, patient out. When she returns, I am instructed to “assume the position” for a gyno exam. She uses a light to look for signs of an infection, even though I told her I was not sexually active. I don’t blame her, I couldn’t possibly be telling the truth about any of this. Patients are guilty until proven innocent when they claim to be in pain. Never mind the fact that she asked me if I was on any medication, and, as I am honest, I named an antidepressant, mood-stabilizer and anti-anxiety medication, indicating that I was most definitely diagnosed with BIPOLAR DISORDER. She then presses down on the left side of my lower abdomen and I let out a yelp. This is the end of the exam. Something makes me think she was a little more dilligent during exams while in medical school. And the Four Rivers Medical Clinic in Winnipeg, MB, officially gets a failing grade in the books of Scars.
“You might have a cyst. You can go to the emergency room if you want to get an ultrasound, but you’ll have to wait for a long time. They won’t give you anything for the pain, neither will I. I can give you some naproxen…”
She is so dismissive I have trouble seeing her as a fellow human being. I am struggling to get off the table without moving muscles that will cause more pain, and she’s offering me Aleve? “I don’t know what to tell you,” she adds, to boost my confidence that nothing is seriously wrong one last time. Such a statement coming from a doctor is always oh so reassuring.
Why don’t you tell me the goddamn truth; “You’re 26, it looks like something is growing on your left ovary for the third time, you were born with a reproductive system doomed not to function, but to cause you immense pain. I’m not going to do anything for you because it doesn’t effect me. What effects me is the possibility of getting in trouble for prescribing painkillers to a diagnosed bipolar person who will likely eat them all at once to get high or try to kill themselves, or for sending you to have an expensive test done upstairs when I don’t really remember what a cyst feels like. No one else will either because we just want to see as many people as we can in order to get paid ”
I stop her before she walks out, “So this isn’t something to really, really worry about today?:
“Probably not.” She looks terribly ambivalent.
This is not acceptable. I don’t feel a miniscule bit more confident that I am going to be just dandy despite unusual symptoms I have never experienced before. Thus, I call my own doctor’s office, and request that I come in for an emergency appointment. The receptionist says that she will call me back “once she has talked to her”. I decide direct action is in order, and go immediately to her office.
“May I help you?”
The same nasal voice that answered my phone call is before me and her matching face is pissed off.
“Dr. Whittaker does not work that way! You cannot just walk in!”
“My sister offered to drive me. I have nowhere else to go and I’m desperate. I need to know what is going on with my body. I shouldn’t have to suffer like this.”
“Well there’s no guarantee that you’ll get to see her!”
“What should I do then?”
“Well whatever, you can sit there and wait, b ut she probably won’t get to your file. She’s already late. Do whatever you want!” She glares at me as if I just insulted her mother or something.
She rolls her eyes. It is 3:00 pm. She tries to get me out four more times using various tactics, but I don’t budge.
“Dr. Whittaker has an apointment of her own and she’s alreadu running behind.”
“You have to book an appointment.”
“You might just be sitting there for nothing!”
Finally, she brings out the big guns.
“You’re not legally allowed any more medication! There are laws about how much a doctor can dispense! No, no, look at this chart! You should have only taken 39 pills out of fifty, or 37! 45! 41…”
“That’s not what this is about, but that is absolutely untrue. I started bleeding on Saturday. Seven times eight is fifty-six.”
Thinking back, I have no idea why this mathematical operation spoke to my case. I knew I could have had a refill by a week ago, but didn’t reqire one.
4:30. “Okay, you have one minute!”
At this point, I’ve been crying about what a sham our health care system is, aside from my pain, and about the lack of humanity that characterizes so many of my everyday experiences. I’m caught off guard.
“Um, should I follow you?”
“YES! C’mon, c’mon…k, there you go.”
As anticipated, things are quickly resolved with my doctor. She explains that I might have another cyst, but that it would not explain the bleeding, and that she would need the results of the very specialized blood tests she ordered to be able to determine that – if it had something to do with the strange antibody that caused my mom to have eight miscarriages, or if endometriosis was not alone as a festering mess in my abdominal cavity. Maybe something else triggered it, maybe it triggered something else – I’ve learned that medicine is a crapshoot a lot of the time, that correlations are often proven spurious, and then proven correct, and then proven spurious again, before any kind of theory that seems sound is established.
She hands me a prescription for an extended release version of hydromorphone and I’ll see her on December 22nd. One week. One appointment.
I am feeling dejected and furious on top of the pain. The pharmacist’s assistant who takes the prescription is the only person today who asks:
“Are you okay?”
I give a slight rant, that can be summarized in the statement, “Why would I be having a hysterctomy at age 26 if I wanted to chow down on painkillers all the time?”
She was a Goddess, horrified at the way I had been treated all day after leaving a funeral early and told me she would bump me up if she could, as the expected wait was forty-five minutes. <ouuuuuuuuuch> I paced the aisles of Shopper’s Drug Mart pointlessly, knowing their entire inventory off by heart by now, kneeling to look at products for no reason but the fact that this position provided some relief. I was very surprised when but ten minutes later I felt a tap on my shoulder – the curly-haired Goddess that had taken my prescription reappeared before me with my painkillers.
I thanked her profusely, as if it were not for rare gems like her that show a little humanity, a little kinship in the sisterhood, a little sympathy for someone in obvious pain – even though she stood in front of a screen listing a hell of a lot of psychiatric medications, perhaps even all thirty or so that I’ve been on at some point in the past! – I may not get out of bed in the mornings. It is people like her, and like you who understand, who empathize with your fellow man and woman, that are the basis for any hope for our world to get better. In my tiny little journey around town, the discrimination and stigma that so many of us deal with daily, took place. We must stick together, sisters and brothers, and show each other love, like the dear reader who sent me the reply below in purple sent to me last time I wrote of my sheer exasperation with people, including friends, treating me like a “drug-seeker” when I had a problem getting a old of my pain medication at “that time of the month” (during my damn period! While menstruating! What’s the big deal about that, too? Why should it be embarrassing?).
Before her letter, I must tell you of an advertisement for the CAMH (Centre for Addiction and Mental Health) website I found in last week’s McLean’s Magazine, the Canadian equivalent of Time or Newsweek that showed the root of the bias that is demonstrated against people diagnosed as “mentally ill” when they complain of pain. I ripped it out and intended to take a photograph of it, but instead threw it in the lanudry (in a sweater pocket, I’m not that crazy! ), thus I must describe it. It showed a picture of an empty bed adorned with some very expensive looking sheets and stated something along the lines of: ‘You have a meeting scheduled for eight am and it is three am. But you pick up the phone and listen anyway, because he is your brother. Jim has bipolar disorder and is addicted to the painkiller Oxycontin. …There is help available…’ (emphasis in original!)
Spend $30,000 and there won’t be any more phone calls, from this annoying “bipolar addict” that you must answer because he is your blood brother. A litany of things about the advert pissed me off, but as I ended up in a situation that embodied many of those things, let me just say one thing:
The way the ad is worded makes in sound like “Jim” was addicted to Oxycontin because of his pre-existing bipolar disorder. Most individuals diagnosed with bipolar disorder are not addicted to Oxycontin or any other narcotic, but ads like this one propogate the myth that the “mentally ill” are involved in some kind of illegal activity. It is this falsehood, that results in people not getting the resources they need, whether they be painkillers to treat real pain, or a place to live, as grant upon grant to open a group home in a certain area is shot down due to neighbours who believe that it would bring drugs and perverts and even homicidal schizophrenic maniacs into the house next to where innocent little Mindy and Matthew live. I don’t know about you, but all the “crazy” people I know are a lot less frightening than the so-called “sane”. In truth, it would liven up the neighbourhood, and probably teach those kids a little something about community, understanding, and demonstrate that we’re not actually so different after all – that it’s true, all madness takes is a little stumble, a little fall… but that with a little help from another human being one can get back up again quite easily, but without that small lift, that tiny bit of compassion shown, your sisters and brothers, for we are all sisters and brothers, may decide that it just isn’t worth it…are you okay with letting them die? Is your answer to that question sane?
I know that if it were not for the hands that have reached out to me when I’ve been down, because of this recent pain condition, or any of the many past and current troubles in my life, I would not still be here. I started to go mad in Vancouver when my roommates just would not talk to me at the end of the day. There is something greatly unnatural about not talking with the people you live with at the end of the day. Perhaps not every day – but for weeks at a time? Silence? I take great joy in smiling at strangers, having a chat with someone at the busstop, or talking to the fellow who everyone else standing in line to pay thinks is out of his mind, and should therefore be ignored. I do not do it because I think it might save someone’s life, I do it because it is fun, it makes my world more colourful, my experience of it more rich, my perception more deep. The truth is, a tiny act of kindness like that which the pharmacy Goddess showed me could stop someone from jumping off of a bridge.
Hell, maybe such little things stop me from deciding to become “addicted to hydromorphone”!
And not because I’m “bipolar”, but because I’m human, and humans are by nature social beings.
Because my family often fails to see the human in me. I guess they must learn, though my father does not show much interest in learning, or rather unlearning, and thus changing. If my sister, never diagnosed as a madwoman, had endometriosis and was taking hydromorphone, the wish would be for her to be freed of her disease. Instead I am the physically ill one right now, and my dad does not tell me, “it will sure be a relief when you can get around to doing _____ when you’re not in so much pain”, he tells me, “it will sure be a relief when you can get around to doing ______ when you’re not on those painkillers.” My every move is judged. Hydromorphone causes certain side-effects in anyone who takes it. Dizziness. Lightheadedness. Fatigue. However, when I stumble or my eyes cloud over for a minute my father, my little sister, and my stepmom, automatically think that I’ve popped extra pills, to get “high”, I suppose.
No. I do not like feeling tired. Don’t you know me at all?? I like to go and go and go. I like to walk like I’m on a mission, because I am, not limp and stumble over things. But that’s how powerful such messages in the media are – that they cause family members to see their own fellow family members, who are not only in pain, but also “bipolar” – and thus “unstable”, “impulsive”, “careless”, etc. – as pill-poppers rather than just people in pain.
So I’m incredibly lucky to have made connections here with women and men like Hilary Hebert, who are freethinkers! Full of love! And take time out of their day to make sure we’re all okay.
Speaking as a woman who knows the monthly pain from hell: A week of pain killers a month doesn’t qualify you as a junkie. Though it is very difficult, try to ignore the ignorance of others. I always found the comments of women who have “normal” periods to piss me off. I have given birth twice. The pain I experienced for days on end every month was more intense than squeezing a human out of my vagina. Most women opt for some sort of drug while in labor. If you experience pain that is equal to labor every month for days, why wouldn’t you take something to dull what you feel? People who have never dealt with the pain of a very grumpy (to say the least) uterus have no right to add their thoughts to the matter. I had surgery 3 years ago to “fix” my problem uterus. It was a HUGE fight here in the states to have it done because I was only 26. The procedure I went for was less invasive than removing organs, but effective. I will never be able to have another child, but it’s all good. I still have a period about every other month. However, I guess it is a period that is experienced by the keepers of a “normal” uterus. It only lasts 5-7 days instead of 12-14 days and I have cramps instead debilitating pain. I’m sending you good thoughts. That will definitely not help with the pain you feel, but know that there women in this world who know what you are experiencing, and do not judge your choice in pain management during the time you need it. Love, love!