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.

 

Sick Or Something Like It

As far as chronic illness is concerned, help can often be a strange bedfellow. We want help. We don’t want help. We know what we want/need. We don’t know what we want/need from others. At least this has been my relationship with help as it relates to my chronic illnesses.

For me one of the most helpful things has been the virtual chronic illness community that I have become a part of. Community building takes time and effort. While the internet has certainly helped mitigate this, there is still something to be said for good, old-fashioned, in-person communication.

But by virtue of our illnesses, we don’t all have that luxury.

Kerri of Six Until Me often shares heartwarming stories about interactions she has with other people with diabetes or those who are close to a person with diabetes. Quite honestly, her stories make me really jealous, because I can honestly say that I haven’t ever had the types of experiences she talks about in person. I’ve never been in line at Dunkin Donuts, or at the grocery store, and have lupus become the topic of conversation. (See also Laurie Edwards’ recent post - IRL: The Rare Disease Edition - at A Chronic Dose)

Why is this?

Well, in some ways, we spend so much time and energy trying to make ourselves invisible to others, to make ourselves seem totally okay, that it’s no surprise these kinds of interactions don’t happen. I think many of us who are chronically ill were quite independent pre-illness, which makes having to ask for help even that much harder.

If you don’t look particularly ill (whatever that means!), and you’re not talking about your illness (because there is a time and a place), how are people supposed to guess that you need help? I think that’s why so many of us tend to search for common ground and understanding from those who are also chronically ill. So much less needs to be said, and so much more is understood.

I’m lucky that early on in my immersion in the chronic illness blogging community that I met Maria Pfeifer through Rosalind Joffe. It’s the type of connection that once you have, you can’t imagine how you ever lived without it. I call Maria my “lupus mom,” but she is so much more than that. She is my friend, and there are times that I have confided in her and no one else. The thing is, I’m in Michigan and Maria is way over across the country in Oregon. I never would have met her if it wasn’t for the Internet. We try and chat in some way everyday, but we have met in person once.

I have participated in the yearly walks for lupus and rheumatoid arthritis for the past few years. And obviously, there are people there that have my illnesses, but for some reason, at least for me, these events never really build concrete connections with people. It’s more of a coming out party of sorts. More of I’m coming out so let’s get this party started as opposed to Let’s come out and make friends.

Recently, I was talking to a relative who told me that she does not view me as being sick. She said she views people that have mental illness or cancer as sick, but not me. I don’t want to focus on her definition of sick, I just want to focus on the fact that she doesn’t view me as such.

This brings about an interesting question. If you are chronically ill, are you sick, too? Is sick too much associated with acute illness? Is being sick all of the time just too sick to actually be sick? Okay, I’m getting bogged down here.

But the thing is, given that the definition of who is sick varies from person to person, what constitutes the need for help and giving help varies greatly, too. Again, asking for help is especially hard when you haven’t disclosed to people about your illnesses, or people perceive you as being totally fine.

I know that when I was first diagnosed, I had no idea what I needed from other people. When your life appears to be in shambles it’s hard to know at which point to start picking up the pieces.

But the point is that help is definitely a four-letter word. It’s hard to ask for, sometimes hard to get, sometimes hard to accept, and sometimes hard to repay. And this may be the crux for us who are chronically ill. Maybe we feel like we are a constant drain on people, and that we will never be able to give back all of the help that we have received from others.

I still have a hard time asking for help. But I think, and hope, that I have become better at and more gracious when I do receive help.

I think for many of us, needing help is the grim reminder that our pre-illness lives of fierce independence and reliance only on oneself are no more. But everyone will encounter a situation in life when they need help, sick or not sick. And let’s face it, since we aren’t masters of everything – although some might like to think so – we will all face situations that we can’t fix on our own.

Life is full of four letter words (including life). Help, sick, well, pain, love; there are thousands, the list goes on and on. Help and chronic illness can either go together like oil and water, or like peanut butter and jelly. Whether you choose to view help as a nasty four letter word is ultimately up to you.