Resolution: Stand Up to Medical Bullies

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I am not an easy patient.  Far from it.  I insist on researching each medication doctors want to put me on, I refuse surgery if I don’t see it as needed, and I refuse to let up or give up.  I am pretty much a nightmare to hospitalize, and even worse in ERs if I’m not treated right.  I question each diagnosis, each lab report, and each cat scan finding.  Hospital nurses usually love me, mostly because I knock the pompous doctors down a notch… and involve them in the most horrendous jokes you can even fathom.  Nurses in offices?  Usually don’t like me too much, as I don’t take orders well if I don’t agree with them.

I’ve been “chronically ill” for 7 years now, it’ll be 8 in April.  6 of those years I’ve been diagnosed as having Crohns Disease.  I know my disease fairly well, I know my body even better.  I can tell you if the pain I’m having is inflammation, an abscess, or an obstruction.  I can tell you if an internal fistula is open, or if it’s healing.  I can tell you pretty much anything about my disease, I can also tell you almost everything about the medications I’m on.

However, over the past couple of years, I’ve become… mentally beaten down.  Wary.  Tired?  I’m not sure.  All of a sudden, instead of questioning everything, I started rolling over.  Instead of chewing out surgeons, I cried and sent them out of the room.  Medication I didn’t agree with?  I took it for months before I stood my ground and threw the pills out.  I’m letting others control a major portion of my life with out forcing them to listen to what I have to say about it.  Just the other day, I rolled over when a nurse pulled an ego-trip and lectured me.  I rolled over and took it… for a while.

This most recent Crohns flare, is just that.  I have a new pocket of inflammation that has been acting up on and off since May.  I was hospitalized for it then with a partial obstruction and pain… the following catscan found it.  Christmas Eve, the pain got really bad.  Christmas Day I was living in the bathroom… Christmas night I stayed up in fetal position because the pain kept me from sleeping.

I called my nurse, and got one I normally don’t deal with.  She was very nice and suggested I go to the ER for some pain relief.  I agreed as I didn’t have any pain medication at home.  I hopped into the ER, the ER doctor (one I’ve seen several times) confirmed that it wasn’t an obstruction and gave me a couple of doses of pain killers and fluids.  Wrote me a script and let me go home.  The next business day I called my nurse back, I needed to make an appointment and ask for something for nausea and pain.

My normal nurse was back.  She went through my medications and started lecturing me about going off of one of them.  I informed her if she answered messages, she would have had a say… but she kept going.  “Well maybe if you stayed on xyz, you wouldn’t be sick.”  I shut my mouth even though I just wanted to yell “I was still sick on xyz, except for then I was losing my hair, dealing with fatigue and insomnia (more than usual) and lack of appetite!”.  I kept my mouth shut.

She kept going on and on.  I cut her off to ask for something for pain.  She refused to give me anything (apparently about half of all GI offices don’t write narcotic scripts), not even drugs previously prescribed by her office.  I asked her who I should call for pain medication, and she told me to go to the ER.  “Umm, I went on Friday.  I can’t go in every day, I have to work too you know.”  She didn’t know.  She had no idea.  She didn’t even look in my chart.  I asked her again who to call, and she wouldn’t refer to me anyone.  “If the pain is that bad, go back to the ER.”  I got off the phone in tears.  All I knew is that I had a bad Crohns flare, with little medicine left and no relief in site.

I made some calls, and someone called my doctor’s fill in for me.  He knew right away that I had already been in the ER, and after small discussion wrote me 3 prescriptions…. and instructions on what to do if the pain got worse, obstruction, blah blah blah.  So to sum that up, a doctor I’ve never seen… who looked at my chart once, trusted me and respected me more than a nurse I’ve been working with for 6 years.

On Monday, my doctor comes back, and I am to call him to discuss my options.  However, I know the nurse has already filled my chart with crap about me quitting one medication.  I was dreading talking to him, I had cowed and taken two different medications this year that I didn’t agree with.  I didn’t want to be bullied into it again.

It finally dawned on me.  I was letting doctors bully me.  I had let a surgeon make me cry.  I had let a nurse make me cry.  I had taken the wonderful care from the wonderful ER doctor’s and nurses, only to be made to feel uninformed and dangerous by one nurse who hadn’t even looked at my chart.  I had agreed to take medications I had notes against in all charts across all networks.  I had stopped standing up for myself and my body.

So that’s where my New Year’s Resolution comes from.  I am going to stand up to my doctors, I am going to tell that nurse off.  I am NOT going to be talked down to because I don’t like taking 2 medications out of god knows how many.  I am NOT going to be bullied because I don’t agree with a certain course of action.  I am in charge of my body and the decisions that swirl around it.  This disease is part of MY life, for the REST OF MY LIFE.  I have to own it, be informed, and make informed decisions.

Having a Chronic Illness is not easy, it’s actually quite terrifying at times.  It’s easy to get down when you’re feeling sick, it’s easy to feel defeated.  It’s heartbreaking to look at the rest of your time on this earth thinking “so this is how it’s going to be?”  We as patients, we as people need to take control and steer our own lives, which includes or illnesses.  If your doctor doesn’t agree, there’s always another doctor, with another opinion.

In 2015, I will not be bullied.

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2 thoughts on “Resolution: Stand Up to Medical Bullies

  1. Great post. Trying to get patient-centered care when you are tired and vulnerable and dealing with ‘expert’-centered care is really difficult. Asserting your right to control your disease is a great resolution.

    As a researcher I have to get ‘informed consent’ from participants before going ahead. This is ethics 101. Asserting your right to make an informed decision is appropriate. Clinical care is one big personal experiment.

  2. I agree 1000% on this. Having lived with this life-sucking disease for the last 20 years, and having known how to use a computer since my dad sat me down in front of an old Apple computer in 1988 at not quite the age of 3, I’ve become insanely knowledgeable about nutrition, biology, medication, anatomy, and of course, my own body. Not to mention a plethora of other conditions that we, as diseased individuals worry we MAY have. Because, without fail, if it’s not one thing, it’s another.

    I always knew exactly where my inflammation was. How can you not when every time a bolus of food passes through that particular spot, you feel pain? I knew exactly where my strictures were in my colon and as soon as I could feel some food get backed up there, I could massage that part of my stomach until I felt it go through. I could tell you as soon as my food hit my colon, because for the most part, I’d always had Crohn’s Colitis.

    This disease forces us, out of pure necessity, to get to know our bodies better than any “healthy” person does. Since we know this, it’s extremely difficult not to get a sour attitude when someone tries to tell you something you should do, that you KNOW isn’t helpful and then scoff at you for refusing their directions or advice. Growing up, my mom always told me to take doctors with a grain of salt; they aren’t Gods, they’re people. They make mistakes. As I’m sure you do, I always question every procedure. I ask what they’re doing, why they’re doing it, and what results we are hoping for that will help us go from there. YOU HAVE TO TAKE YOUR HEALTH INTO YOUR OWN HANDS. I’m not capitalizing this sentence for your sake, because that’s obviously what this post is all about. I’m capitalizing it for it’s importance. For it’s frightening truthfulness.

    There are great doctors and nurses and there are not-so-great doctors and nurses. Even further down the totem pole, are the flat out AWFUL doctors and nurses. Another thing of which my mom has always reminded me: some people graduate at the top of their class and some people just barely pass. Scarily enough, even if they “just passed,” they still were able to become a doctor. I’ve always kept this in mind. This is why I flew to Cleveland for 6 out of 7 surgeries (one was just fixing my stomal prolapse…aka when I had a bag, my stoma didn’t stay, for lack of a better visual, “cute and small,” but instead decide to telescope from both sides of the loop, so that my intestines were literally turning themselves inside out to escape my body). Although the travel was costly, Cleveland Clinic is actually one of the most financially feasible places to treat a major, acute problem. The plethora of different types of doctors that come to see you and actually COLLABORATE saves on the expensive of doctor hopping and they end up figuring things out SO much more quickly!

    I will finish this comment (book) by saying I really hope that this new year’s resolution transforms you and your health for the better; I think that it will. I’ve had doctors and nurses ask me MANY times if I was a nurse because of how knowledgeable I am about my body, disease, and medical procedures, treatments, etc. Growing up in a children’s hospital on-and-off, I was constantly amused by the looks on doctors faces when they would direct their questions at my parents and then I’d respond and they’d end up having a coherent conversation about my health with me, a child. I’m excited for you in 2015. Despite how much it all sucks (understatement of the century), we always have the satisfaction of knowing that we’re stronger than any healthy person ever could be. When your own body is a battlefield, you learn to survive.

Reply, do it, you know you want to!

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