The Language of Illness

Since I can remember, the words "handicapped" and "disabled" have made my stomach turn. I have never used those words to describe myself, even at a time when I had a handicap placard and very much fit the definition.

I chose the title of my book, "Sick Girl Speaks!", as a tongue and cheek way of asking what does being a "sick girl" look like?

Recently, I began noticing when I said things like "my CF" or "I'm a lung transplant." Is it my CF or THE CF. Am I a lung transplant? No, I am a person who had a lung transplant.

The use of language in relationship to illness fascinates me. What words do you embrace and which do you shun? Why? Do you think the little words we use, like "my" CF instead of "the" CF make an impact on our psyche?

I can't wait to hear everyone weigh in.

An Honest Look

Last week, I was talking to a nurse practitioner who runs a local health clinic. It was my job to take the concerns and critiques from those who frequented this health center and present them to her. From there, I was to come up with various angles on advocating within this system.

Jenny, the nurse practitioner, is a beautiful, kind and dedicated caregiver. She has been working at the same place for roughly twenty years. Her passion for her work and her desire to make the clinic as effective and patient-centered as possible is crystal clear.

After collecting my surveys from the patients, I went in for my meeting with Jenny armed with three pages of issues to discuss. This clinic has a stellar reputation and many of the surveys cited no complaints and that the staff should be "given a medal for sainthood." Many of the issues were simple misunderstandings and Jenny and I moved through them quickly, feeling gratified that we could clarify things for the patients.

There were one or two complaints, however, that were more serious. Accusations of over-medicating geriatric patients and a few stories of visits gone awry. I thought nothing of this before the meeting but when I presented these few complaints to Jenny her faced changed in a way that seemed very familiar. We kept talking but the back of my mind wanted to store that look on her face to revisit later. I knew I had seen that face before.

As I drove away after our meeting, it hit me almost immediately. There, in front of me, was the face I had seen my mother make too many times. I had seen this face on other mothers as well. It was the expression you see when a child tells their mother "I hate you" or "you don't care about me!" The face of a person who has given everything, sacrificed themselves more than anyone could ever know, only to be told that it isn't good enough.

Jenny's facial expression matched that of my mother when I was in my nasty teen years because, like a mother, she had dedicated her life to these people and given her heart to her work. To discover that some people did not see her sacrifices but instead had only criticisms, well, it broke a piece off of her heart. The face I was seeing was a person crushed by lack of appreciation.

How often does this happen in the world of healthcare? I would venture to guess it happens on a regular basis. With Jenny in my mind, I began to think about the healthcare professionals I had put in my critical sights. I thought of "Betty," the transplant coordinator I wrote about in "Sick Girl Speaks!" Betty was the one who told me to forget about a second transplant and prepare to die. When "Vicki" took her place and offered me a chance on the list, I immediately began to attack Betty for her lack of foresight, compassion and energy. I accused her of being lazy and of not caring about her patients.

Seeing Jenny's face made me think back to those criticisms and I had to ask myself if those things I believed about Betty were really true. I had to admit to myself that I could never know the reasons Betty did what she did and therefore, I could never know if my judgments of her motives and character had any merit whatsoever. I imagined Betty's face as she read my book and felt remorse. What if she believed what she told me and she thought she was doing the best thing she could by telling me the truth? What if I had crushed Betty with my lack of understanding and appreciation? What if I had been entirely unfair?

And so it is, my continued journey into transforming my perceptions of healthcare professionals. Because we all carry the banners of "us" and "them" in our current healthcare culture, making bold and hurtful statements like mine comes to many patients easily. Too often my caregivers appear as the enemy, especially when they deliver news I do not want to hear in a way I do not want to hear it.

So, to Betty and others, I apologize for my bold and possibly false assumptions. To Jenny, I thank you for letting me see the disappointment that comes when dedication meets disapproval. When I find myself blasting my doctor or my nurse in the future, I will think of Jenny's face first from now on.

Humans. I am finally seeing my providers as humans. How strange that I have accused them for so long of seeing me as an object, an "it", only to discover that I have been doing exactly the same thing myself.

Compulsive Positivism

I spend a lot of my time talking to healthcare professionals and students about offering "honesty when honesty is requested." I ask that they begin to consider that a person can find joy no matter the physical issues. I preach that they should give us patients more credit and not automatically assume we need coddling.

But, then, there I am talking to a fellow CF/Transplant buddy who is facing rapidly progressing chronic rejection and I can't stop sugar-coating, pitying and coddling without provocation. My mouth is spouting some dramatic declarations like "maybe this is the worst of it and things will get better from here" and the back of my mind is yelling "will you shut up? he doesn't need your half-baked reassurances!"

This person, Tom, was speaking to me in part because I have been to a similar place. I have had chronic and I have had to weigh my options while watching the important numbers on the pulmonary function tests drop and drop some more. Tom didn't want sugar, he wanted truth from someone who has been there and could talk about the hard stuff most people would run away from. But, in my own way, I ran away too. I just couldn't stop with the platitudes.

What happened to me? Why was I powerless over my compulsive positivism? What is it about human nature or this culture we live in that is so firmly embedded in our DNA that even when we want to "get real" we somehow find our mouths filled with sugar, telling tales of lightness while standing in the middle of darkness?

I am sorry, Tom. I feel I let you down. You asked me for an honest ear and instead I bulldozed over you when you tell the truth of your anger, your fears and the reality of your physical body. Instead I offered up inane ideas like "maybe the tests are wrong" or "you feel that way now, but I'm sure you'll feel better tomorrow." What kind of friend am I? One that wasn't able to deliver on the promise of being a safe place to fall.

Where did this need to make it all better come from and how do I stop it?

Sick Girl Speaks Some More

I have toyed with the idea of writing another book. In fact, months ago I made a big announcement that I was "pregnant" with literary child. That book was a fine idea but one I failed to follow through on.

So here I am again. Deciding that I am ready for book # 2. Will it happen? I hope so.

"Sick Girl Speaks Some More; Building the Bridge in Our Medical Revolution"

This book will focus on things I have learned this year by poking my head behind "the other side of the curtain." There are things I know now that I didn't know a year ago. There are things in Sick Girl Speaks! that I would like to get more specific about or clarify. There are topics I didn't explore that I would like to now. There are some issues I feel more brave in talking about and some I feel more humbled by and would like to approach with more balance and compassion. Overall, I will continue to focus on patient advocacy and providing a window into the patient experience. In addition, I would like to find ways to remove the "us" versus "them" mentality from my work, and ideally the entire culture of healthcare, so that we can move forward as humans in this medical maze together.

I have learned so many things this year. I will learn many more next year. Maybe next year's book will be called "Sick Girl Speaks Again." Who knows? For now, I am aiming for a December deadline and a new book to be out in early 2009.

No promises but it sure makes my mouth water just thinking about it.

What do you think? Would you read another book like "Sick Girl Speaks!" ?

LOL...or no?

This isn't really an illness related post. It's more a "I'm new to this whole grown up thing" post.

So, I know how to be formal and professional. Unlike many of the youngans today, I know how to send a proper email/letter with commas, capitalization and periods. Yea me.

When I write friends tho, (example) I enjoy the new abandon of all of the grammar formalities listed above. i write like this lol

So, here's the thing. Writing emails (as with writing letters...but they are fast letters) has drawbacks. The biggee is that they have the possibility of being misinterpreted. My tone might be simple and include straightforward questions but it could be read as rude or impatient. This is partly why the :) has become so popular. You know I'm writing a joke when the sentence is followed by a :)

So, I have more and more emails every day with people I barely know but really like. People who are booking me for things or helping me make important contacts. I use :) pretty quickly, like maybe 4th or 5th email into a conversation with a new person. I am finding myself really wanting to use LOL now.

Is it ever appropriate to use LOL in a professional email? If yes, in what circumstances? If no, what about :) ? Is that innapropriate?

Our world is changing. The younger generation doesn't even know what a cover letter is and people older than me don't know what btw means. I feel stuck in the middle of a transforming email culture.

Any protocols or are we left to our own ediquette devices now??

Right to Refuse or a Ruse?

In looking at Patient Advocacy, I have begun doing some research into the "Patient's Right to Refuse" and it has been both fascinating and scary.

Is there truly a right to refuse if doing so may result in "non-compliance" or "Against Medical Advice" being noted in your chart??

For those who don't know, being labeled "non-compliant" or being noted as going A.M.A. can result in a physician's refusal to treat you down the road. If it has been documented that you have not complied with medical regimens or medical orders, this gives the docs grounds to say that they won't do surgery on you or give you other kinds of therapy because you won't be responsible enough to care for yourself and follow orders.

While this makes sense on the one hand, it worries me to know that one day I might refuse a useless and unneeded MRI only to later find myself as labeled "non-compliant" or, worse, AMA. What if I chose to not have the elective stomach surgery the docs told me they wanted me to have? Would I then be non-compliant? AMA? I can't afford to take those risks but I also can't afford to follow every medical order blindly.

Here's the crazy part--these terms, non-compliance and AMA, have no real guidelines. They are arbitrary and rest in the hands of each healthcare professional to use at their discretion.

Is the Patient's Right to Refuse a right or a ruse? Is elective surgery elective when your doctor tells you to do it? Where are the lines? Why aren't there clear guidelines for doctors to follow? Why are these potentially powerful labels so ambiguous? Isn't that dangerous for us patients? Doesn't that leave us at the mercy of personalities and moods instead of protocols and thought-out boundaries?

Please weigh in on this topic!!

Once a Patient, Always a Patient

With all of the good fortune and running around I do, I must admit, these transplanted lungs let me forget from time to time that I was once a "sick girl." Now I'm more often the "speaks" than the "sick" in my blog title. That is good. That is wonderful. I don't know why I get to be so lucky to have moments, maybe days?, where I feel like a healthy person.

Having said that, there are times when being a "sick girl" floods back to me. Sometimes it comes in the form of an overwhelming memory. A smell, a story or being inside a hospital can transport me back to my sicker days in an instant.

And then there are the moments of worry--that internal evaluation and diagnosis that never seems to completely turn off for us frequent fliers. Often, this worry can be scary; "Do I have Chronic again?" "Am I getting sick, is it pneumonia?" "Is that pain in my back from my kidneys--are they finally giving out under the weight of these medications?" These are not uncommon thoughts to be running through my mind and certainly they are unsettling.

Sometimes, however, even I have to laugh at my internal evaluation and diagnosis.

I was driving down the highway the other day and I felt a cold sensation in my left hand. At that time, I weaning off of my blood pressure medicine and my thoughts immediately went to the connection between my left hand and my heart. I took my hand off of the steering wheel and the sensation went away so I decided the symptoms were positional. For the next few minutes, I experimented with my hand in various positions; above my head, on my lap, out the window etc. The only position that produced this symptom was on the steering wheel.

As I contemplated the symptoms of a heart attack and wondered if a positional cold sensation was a lesser known beginning stage to cardiac arrest, I looked at my dashboard. This was a hot day, the first in a week, and the air conditioning unit's fan was blowing directly onto my left hand. The "positional cold sensation" was the air conditioning--an external sensation, not internal!

I laughed all the way home. What a dummy, right? No. Not really. When you have been down the illness road, you never let go of the internal evaluation. When you want to be a proactive patient, you look for warning sides. When you love life, you want to protect it. And sometimes, during your investigations, you make the kind of error you are happy to make when the air conditioning fan is blowing on your left hand.

Being a patient is strange sometimes!

Do you have any stories of illness investigations like this one? Do you have other stories in which it turned out to be something and you caught it by being aware? I would love to share stories like these with professionals and students to help them understand the internal evaluation process that becomes second nature to those of us with illness.

Please share your stories with me and I will share them with those who need to understand what life is like when one is Once a Patient, Always a Patient.

Great Review

Thank you, Jim!
Check out this book review
It is so generous and well written!
I love it!