Wednesday, March 28, 2012

Patients Rights Are Human Rights

One of the most trying occurrences during my recent health crisis has been the attitudes and behaviors of some of the medical professionals I have encountered.  While technically, this is nothing new, the degree and frequency with which it has been occurring lately has been incredibly frustrating. 

I went to the student health center for a rogue yeast infection.  It was hard for me to tell what it was at the time because it had gotten so bad, with no obvious sign of improving.  I usually avoid walk-in at the student health center, but in this case, I didn’t feel that I really had the option of waiting to get an appointment.

I have never felt so unfairly judged in my entire life.  I was told that the doctor hadn’t bothered to look at my chart because it was “too thick.”  Then I was refused oral antibiotics because it was deemed that I’m “on too many oral medications already.”  This meant, as many of you with immune system problems know, that I suffered with something for an additional two weeks, when, had I been given oral antibiotics, probably would have markedly improved in about two days.

The reason I didn’t say anything at the time is because I was totally in shock by the treatment (or lack thereof) that I received.  And I was deeply hurt.  I filed a complaint with the student health center, but I guarantee nothing will be done.   

And if I had a dollar for every time a phlebotomist asks if I can bend my elbow any straighter, I’d be so f***ing rich.  I’m so sick of it.  I have arthritis, so no, I can’t bend my elbow any straighter when getting blood drawn.

I tried to see if some note could be added with my information, so that this is something that lab techs will know ahead of time.  But I was told that there’s really no way for them to do that.   

And my veins.  Everyone has a complaint about my veins.

And when my rheum’s office called to tell me I could go back on MTX, the nurse who called left me a message, with my new dose: the oral dose and not the injectable dose.  She left me a message, and I was told to call and let her know I understood her instructions.  And I confirmed what the injectable dose should be.  And the response from her was, “Sorry.  I guess I should have looked at your chart.”

Here in lies the problem.  I have a chart for a reason.  I know it’s four inches thick.  I’m well aware.  And I might just hit the next medical person who sasses me about it over the head with it. 

Ultimately, I don’t feel bad for these people.  I’m sorry if through things I can’t control, your job is made more difficult.  But I don’t feel bad for you.  You’re not the one going through all these things.  I am.  And it is made all the more difficult by me being treated like a leper.  An enigma.  A pariah.  A drain on the system.  A complicated patient. 

It’s my chart, my arms, my veins, my everything.  And when I’m nothing but nice to you, is it so much to ask to be treated with the dignity, respect, and kindness I deserve?  Not just as a patient, but as a human being.

Isn’t it my right as a patient to be treated like a human being?

It’s amazing how quickly you can go from being a human being to being a patient.  And while the treatment should be the same regardless, it’s clearly not. 

There just isn’t room in the system for people like me, people under 40 years old who have significant health problems.  Nobody wants to deal with us.  So they treat us like shit. 

I don’t want the ER to be the first line of defense, but student health is exasperating, to say the least, and my specialists at the hospital are all totally overloaded.

And the bottom line is that doctors, when they need medical attention, aren’t treated this way.  I’ve watched many a time, waiting for my own appointments, where the red carpet is basically rolled out for doctors.   

It’s good to know that there is a Patient’s Bill of Rights.  But it focuses mainly on insurance issues.  It goes nowhere toward addressing the issues of climate that exist for patients in the medical setting. 

Maybe I’ve spent too much time in the medical arena in the last few years, and more specifically, in the last few months, but it doesn’t look like that is going to change any time soon. 

So what do you do when no one will listen to you?  You can fight for yourself to an inch of your life, and get nowhere.  But I don’t want to fight.  I just want to live.



  1. How frustrating - especially the doctor who refused to read your file. That's shocking - and clearly of great consequence to his or her ability to treat you effectively.

    I always get the "can't you straighten your arm all the way?" question, too. I try to use it as an opportunity to inform whoever is taking my blood that young people get arthritis, too. In general, I've had positive experiences with this - people are often surprised and ask questions, which I appreciate. Still, it's frustrating that it continues to happen. It's never actually prevented anyone from getting blood from my arm, anyway.

  2. Ugh, I feel this post so hard today. Having recently attempted to find a new PCP after diagnosing my former doctor-patient relationship unredeemable, how I've come to want to smack them with my own four inch chart for their own reluctance to deal with "a complicated situation/case" (which I very well might be, but -- I'm also -- and foremost -- a goddamn person. It's like I want to take the "you're too young to be this sick" right with the "I can't read this whole chart" and just beat them senseless until they wake-up and realize it's their job. And I understand that doctors have their defeated days. And, as a trained social service professional, I understand physician reactions can be about depression, burn-out and fearing their own fragility/mortality/inadequacy/dark scary monster in the closet. But, still. A commitment is a commitment. And a commitment to be a physician should be not only about practicing the clinical delivery of excellent science but about delivering the best non-judgmental non-editorialized thorough care 100% of the time. (Or as close as a human can get!) Serious solidarity with you and your frustrations.

  3. Oh man! That sounds HORRIBLE!!!!!

    I am SO grateful for one particular doctor in my life right now. He gave me his office number and told me to call him on a regular basis. So he's acted as my advocate on multiple occasions.

    I've had equally horrible stories with campus health. In the school I'm in now, the doctor actually told me that since I didn't have pneumonia or the flu and I didn't want birth control, she refused to take me as a patient. She said, "You need to see a specialist." No recommendation what type of specialist. No offer to write a referral. (This school requires a referral for every single specialist in their hospital!!) I had to find my own primary care physician elsewhere.

    I've learned to be very assertive. I know what I need and I know what I want, and I'm not leaving until I get it. My last conversation with a reception went something like this, I need to make an appointment with an MD. I'm sorry. You are assigned to a nurse. That cannot be changed. I do not want to be seen by a nurse practitioner. I was referred to the MD. I have to see an MD. I'm sorry, ma'am. That is not possible. I need an MD. What are my other options? None. Uhh, let me make a phone call. *phone call* Yes, that would be fine. The MD will see you. How about Thursday?

    It's tough. I'm not a very bossy person. But you have to remember that you are the one that is sick. You are the one who lives with the consequences of whatever someone else decides to do. And you are the one paying for it (with money). SO it really should revolve around you. While I would not recommend becoming the most annoying patient ever, standing up for yourself demonstrates to the medical professionals that you take your illness seriously. They will have to as well.


    P.S. Not to make this the longest comment ever, but I've also starting carrying around my own medical records. When I pull them out and they see how thick it is, they usually start taking me more seriously. Because I know a lot of jargon and I can pull stuff out and demand them to look at it, they realize that they either have to deal with the fact that I need medical attention or they're going to have to mumble that they're not interested in taking me as a patient and walk out the door.