Sunday, February 15, 2009

Patient Portraits

One of the great freedoms that comes with age is the understanding that I am different than you. Just because I respond to a situation in one way does not mean you will have the same reaction. We are all bound by the commonality that is our humanness but, at the same time, I often find myself in a state of awe at just how unpredictable and mysterious my fellow man/woman really is.

Whether it is a religious belief, a work ethic or the technique used to squeeze the toothpaste tube, we live in a world with endless choices and opinions. When we hold a narrow view which includes only that we which believe to be true, we find ourselves in a place of judgment, frustration and conflict. When we expand our view to allow ours to co-exist with those around us, we find ourselves in a place of fascination, expansion and compassion. It took me a long time to understand that when I welcome your foreign perspective, it does not then cancel my own. I can both live by my truth and respect yours.

While this applies to life as a whole, it also specifically applies to life as a patient. There is an unspoken criterion for what makes a "good patient" and those outside that criteria may find themselves being judged for not measuring up. A good patient is compliant, happy, agreeable, motivated, respectful and grateful. On several occasions, I have been asked by both healthcare professionals and family members how to make a patient fit these criteria. They wanted tips on how to inspire or shame a person out of anger, fear or self-pity. While I agree that those states are not optimal for recovery, they are a part of healing from the inside out. You can not feel gratitude until you have allowed yourself to feel self-pity. There are no shortcuts.

In addition, there are many ways to be a patient. The "good patient" shoe will not fit on every foot. To see all patients as capable of behaving this way is to see those who don't as failures or, a more popular term, as victims. I won't lie and say I don't get frustrated when I see patients who are locked in their own prison, victimized by their illness. It seems like it shouldn't have to be that way but who am I to say what your experience should be? Likewise, who is my nurse or my doctor to tell me how I should or should not be reacting to anything?

Truth be told, healthcare moves at the speed of light and few professionals have the time to uncover the motives, feelings or needs of anyone acting like a "victim." These patients slow down the process, make the job of caregiving harder, and therefore these are the people who are judged, written off or just misunderstood. Perhaps if we all stop seeing healthcare through our own eyes, we can take a moment to look at the different ways people react to and move through illness. Perhaps by doing this we can have more patience, more compassion and have more to offer.

Patients come in all shapes and sizes, ethnic and socio-economic backgrounds and pre-existing personalities. Just for fun, I have drawn some patient portraits with my words to match my observations over the years. It is my hope that this will generate some thought on just how different we all are and how we can be treated accordingly. Despite wearing the same paper gowns, we all react to the crisis of illness in our own, unique way.

Because at the bottom of any illness scenario is the feeling of being out of control, I have focused on how different individuals seek comfort within the unpredictable world of illness.

The Compliance King or Queen
Finding Comfort: This patient finds comfort in doing everything they can to have control over the illness.

Becoming Empowered: This patient feels most empowered when they have a skill set, rules to follow or schedules to maintain that, when implemented, will result in better health.

The Draw Back: This is an ideal patient, medically, but runs the risk of becoming neurotic about missing a dose of medicine etc.

Caring for The Compliance King or Queen: This patient will have a hard time when there is nothing else that can be done medically and may be better served having tasks and goals to give the illusion of control no matter what.

The Sensitive Patient
Finding Comfort: For the Sensitive Patient, life revolves around relationships and the relationship between themselves, their loved ones and the healthcare professionals is paramount in their care. More than anything, the Sensitive Patient finds comfort in having family and friends close by to encourage maximum healing.

Becoming Empowered: Empowerment for The Sensitive Patient may come from those around them affirming the need to have the patient get well and be in their life. Sometimes, The Sensitive Patient finds it easier to be motivated by others' needs than their own desires.

The Draw Back: These patients have a hard time being taken care of because they are most comfortable being the in the caregiving role themselves.

Caring for The Sensitive Patient: This patient has a tender heart and will be troubled seeing the pain and worry in the eyes of those they love. It is important for those caring for them to remind them often that the caregivers are getting something out of it, like a sense of closeness or service.

The Potentially Proactive Patient
Finding Comfort: This patient finds comfort in external validation. This can be difficult to come by in a healthcare setting. This patient will find the most comfort when they discover their own power, perhaps as an advocate for themselves or a mentor for other patients.

Becoming Empowered: For this patient, the feeling of worthlessness can be devastating. It is essential to guide this patient to finding a way to be empowered within this role of patient.

The Draw Back: This patient can become angry and non-compliant if they feel they are not being treated as a competent person. They hold the potential to rebel to prove a point, which can be detrimental to their health and healing.

Caring for The Potentially Proactive Patient: Healthcare professionals will find treating this patient as a peer will inspire a greater sense of responsibility and therefore a greater motivation to be proactive in their own care. Most important, this patient must find ways to feel valuable within their illness circumstances.

The Alternative Patient
Finding Comfort: This patient finds comfort in going outside of the norms and looking for their own solutions to healthcare problems. This may include seeking supplemental alternative therapy, a spiritual approach to healing or creating their own healthcare game plan.

Becoming Empowered: This patient feels most empowered when they are not conforming to the traditional health plan but instead, finding new and progressive alternatives.

The Draw Back: These patients run the risk of going so far outside the norm that they miss out on the benefits of common medical practices.

Caring for The Alternative Patient: As a caregivers, it is best to encourage a integrative healthcare approach which will allow for maximum treatment options while satisfying this patient's needs for new ideas.

The Analytical Patient
Finding Comfort: This patient finds comfort in the pursuit and mastery of pertinent medical knowledge.

Becoming Empowered: This patient will be the one who earns an honorary medical degree through exhaustive research on whatever health issue they are facing. This patient finds empowerment through satiating their desire to posses as much knowledge as those treating them.

The Draw Back: This patient holds the potential to be blinded by their own studies and not rely on the real life experience of those treating them.

Caring for The Analytical Patient: The Analytical Patient may question diagnoses, make their own treatment recommendations or seek new healthcare professionals practicing with the most state of the art philosophies and techniques. This patient is best served when regarded as a consultant in their own care; they will respond best when their research and analysis are carefully considered by the healthcare team.

The Wide-Eyed Patient
Finding Comfort: The Wide-Eyed Patient finds comfort in observing, asking about and participating in the healthcare activities around them. Unlike the Analytical Patient, this is not an academic endeavor but rather one in which they find joy in new experiences, even in the midst of illness.

Becoming Empowered: This patient may ask to watch the screen during a bronchoscopy or to push their own IV medications through the line. It is through this exploration of the world around them that they feel most empowered.

The Draw Back: This patient has fears and worries just like all other patients but may mask that with their curiosity in the world around them.

Caring for The Wide-eyed Patient: It is important to indulge this patient's curiosity as much as possible but to not let it completely hide the need for emotional support when the "fun" is over.

The Bossy Patient
Finding Comfort: This patient is easy to spot. They find comfort in controlling their environment and the people in it.

Becoming Empowered: This patient often sees themselves as an authority on many things and might make strong assertions based on little factual evidence. They require being informed in detail about the options and issues at hand. The Bossy Patient feels most empowered when, after gathering enough information, they feel they are "calling the shots."

The Draw Back: This patient can become consumed with their own anxieties to the point that they do not notice the discomfort they are causing family, friends or professionals with their demands.

Caring for The Bossy Patient: The Bossy Patient is often loud and holds the potential for emotional outbursts. It is best when treating The Bossy Patient to keep them as calm as possible, reassure them that their opinion matters and try not to take any outbursts personally.

The Passive Patient
Finding Comfort: This patient finds comfort in trusting the authority, in handing their fate to those doctors and nurses who know more and have the skills and experience it takes to handle a healthcare problem.

Becoming Empowered: This patient feels most empowered when they have someone close to them who can coach them and support them through the healthcare experience. They are capable of being their own advocate but need validation and encouragement to act on their own behalf.

The Draw Back: While the trust The Passive Patient holds for professionals makes this patient easy to work with, there is a price to pay for violating this trust. Once a professional has behaved in a hurtful way or made a medical error, this patient has the potential to explode or, at the very least, stew silently while planning their escape from your care.

Caring for The Passive Patient: This patient will appear to have few opinions and will usually be quite pleasant. The Passive Patient rarely questions professionals and will often remain quiet even in the face of emotionally insensitive staff. Do not be fooled by this exterior, however, because this patient is watching and evaluating everything. It is in the privacy of friends and family that The Passive Patient will reveal the pain, anger and trauma they experienced in silence.

So, what do you think? Do you see yourself in any of these portraits? Have I painted a realistic characterization of you or some of the patients you know? What patient portraits have you observed? Do you think that if we embraced the idea of everyone coping differently, we would have a more compassionate healthcare environment?

Thursday, February 12, 2009

When Things Get to be Too Much...

I suppose it could come from the fact that I have lived my life feeling the need to "prove" to people that I am valuable. Valuable even though I have no college degree. Valuable even though I will never have children. Valuable even though I think about and talk about the things that most people want to avoid. Valuable even though my body is sometimes fragile, often quick to tire. Valuable even though I am not "normal."

Maybe that's part of why I work so hard. Maybe that helps inspire me to find the opportunities for growth and discovery within difficult or unusual circumstances. I feel most valuable when I help people, when they see themselves in me and find a new, undiscovered strength. I feel most valuable when I am "making a difference."

What's wrong with that? Nothing except that my work is not sustainable 100% of the time. No matter how healthy my body is today, no matter how smoothly work is going, no matter how much I am surrounded by those I love, I still have days where I am not who people want me to be. I have days in which I am sad, tired, discouraged or lonely. But this is not the side of me people find helpful so this is the side of me that does not feel valuable.

Yesterday was one of those days. At times I feel a weight on my shoulders; the unanswered emails, the lack of blog posts, the book chapters not written and the marketing that has gone cold. It is days like this when the work outweighs the joy and I feel too small for the tasks at hand. I feel like my fatigue is a sign of weakness on a road in which I have not gone far enough. I feel like I am not enough.

So, what does one do on a day like this? Push harder? Lay down? Cry? Reach out?

I experiemented with all of those things. Pushing harder made me feel as though my heart would explode, this body and mind were already at maximum capacity. So, I stopped pushing and tried trusting. Trusting that one day without work, a week without blogging, a month without marketing, would have to be ok. I trusted that the work I have done already will carry me through the times when I have less to give. I trusted that if this is truly what I am meant to do, it won't all come crashing down. I had to trust that taking care of me would be of the greatest benefit in the long run.

So, I laid down. I cried and I could feel the stress melting out of my back. I reached out to friends and family for support and held on to the knowing that they would love me even if I quit working today and never wrote another sentence or gave another talk. And then, I remembered all of the times in the sick world when I had to stop pushing and give in to the truth of my body and the fatigue of my mind. I remembered the warmth that came after accepting that today was not going to go as planned.

I remembered learning from my CF days that there is nothing that can not be rescheduled. So I made it a Cancellation Day and canceled all of the meetings on my calender. They could wait until I felt better and would be more productive then anyway. I canceled and canceled and canceled and guess what? The world did not stop spinning, the sun kept on shining and no one seemed to notice. How ego wants me to believe that taking a break will ruin everything for everyone! But, time after time, I see there is nothing that can not be rescheduled.

After I cleared my schedule, I lit a candle and had an afternoon of Sacred Television. To appease the critical voices in my head about "not doing enough" I have learned to make rest as much of a ritual as meditation, work or socialization. So, when the candle is lit, and the television is on, this is sacred time for my brain and body to rest.

Today, I am still tired but I do not feel lonely or discouraged anymore. Healing is my responsibility and it does not only apply to times of obvious physical illness. Healing is also needed in times of fatigue, stress and self-doubt. Today, I will continue to nurture myself with rest and compassion. I will give myself permission to write, market and push myself another day.

Oh, but wait. I just wrote something, didn't I? Progress!
Oh, Mr. Balance, how you puzzle me!

Thursday, February 5, 2009

Finding Your Voice has a new Face

I just have to say how excited I am that this year's grant has allowed us to hire Zach Ward of DSI Comedy Theater to create a new marketing campaign for the "Finding Your Voice" series. This year's Finding Your Voice workshops are already booking up and things are going so well. If you're on facebook, please consider joining the "Finding Your Voice" fan page! We need and love fans!!!

Here is one of the graphics he designed for us....ain't it purty?
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