A Patient’s Perspective: Focus

If focus is defined as the center of interest or activity then I’m all about the focus.

My life is a balancing act between too much focus and not enough focus. As if that’s not enough of a challenge, as a chronic pain patient I often become so focused on one thing that everything else disappears.

Sometimes that pain is so bad it’s all I can focus on. I can’t and don’t focus on anything else. I’m angry at everything, including myself, because I can’t do anything but be about the pain. And, when the pain lessens, and after the initial relief subsides, I look around and see the damage that pain … and my ultra-focus and non-focus … has wreaked on my world.

I’ll be honest, I don’t always know what to focus on. I don’t always know when to focus on something and when to stop. And, there are times I don’t have the wherewithal to focus on anything at all.

I’m often told to focus on what I can do; don’t focus on the pain.

I’m often told to focus on the positive; don’t focus on where my disease is going to take me.

I’m often told to focus on what we are going to do next to manage pain and hold off further damage; don’t focus on what damage is being done to my body and organs every day.

It seems as though everyone has a different idea about what I should focus on; what I shouldn’t focus on. Fair enough, because I have a definite idea about what should be focused on and what shouldn’t.

Case in point: Am I too focused when I’m concerned about whether the red, puffy incision sites from my surgery are looking worse? Am I not focused enough because I didn’t wipe off one of the incision sites after a shower? Did I lose focus too soon? Am I focused too much on how the sites are healing?

Case in point: Am I too focused on whether the physician is paying appropriate and adequate attention to my current concern? Am I not focused enough on the fact that the physician is actually taking notes while I am speaking? Did I focus on the wrong things, not enough things, or what?

Case in point: Am I too focused on being a patient that other parts of my life haven’t had any attention in quite a while? Am I not focused enough because I just can’t seem to get a handle on all the moving parts of my health portfolio?

Here’s the thing: Focus is all a matter of perspective … and it’s always a good idea to consider the other person’s perspective. You could say what is too much focus for one person or situation is just the right amount for another. You could say I have a right to determine the amount of focus I place on anything to do with me. Consider, however, that sometimes what I’m really interested is not paying more or less focus on something, but rather, asking someone else if it is the correct amount of focus.

When I asked about my incision sites, I was told what to look for, when to be concerned, and what to do about it. I had a checklist. I had a plan. It gave me peace of mind so I could focus on other things. Sometimes, that’s all I need … a clear idea of what I should be looking for.

Remember, there’s always a reason for my focus … often it’s pain, fear, a missing piece of information. With fulsome, meaningful, and respectful consideration I can have the kind of conversation with my care team that ensures we are all focused on the best thing at the right time … maybe even at the same time ….

A Patient’s Perspective: A Typical Medical Encounter

Why am I not astounded at what is expected of me as a patient?

Consider this visit to my dermatologist …

In order to be thorough (and who doesn’t want their physician to be thorough) I was instructed to remove all my clothing (except my underwear) and don a gown (why call it that when it really isn’t). As I moved to do so, I observed a floor to ceiling window facing the park outside. There was a cyclist speeding along the path and a small group of people out for a walk.

I resisted the perverse urge to wave.

Returning to my task, I folded my clothes neatly. Seeing no stool available, I resigned myself to an awkward boosting of myself onto the table via one foot on the chair. And then I resigned to wait, only to realize it was indeed very cool in the room.

At last my dermatologist arrived. As a skin specialist and because this was the first time we had seen one another, she wanted to see my skin … from scalp to toes … and so she did, moving my gown as needed in order to conduct the examination.

That over with, she sat at her computer and began to make notes of her findings, asking me questions. Actually, the first question was where was all of my information? You know … the information my referring physician was supposed to have forwarded to her. Without missing a beat she began to pepper me with questions.

Problem was the information she wanted was on my phone … in my purse … across the room.

Now, I know it wasn’t far, but the table was high enough I couldn’t get down easily, and I know she had already seen me during the examination, and I know I had already made peace with the folks outside, but I hesitated. This was just one too many indignity for one morning.

Was it merely unfortunate there was a window without covering, the room was cold, the table too high, and the gown too un-gown-like?

Was it merely too far-fetched technology has not advanced to the point where a physical examination doesn’t require clothing removal?

Was it merely inconvenient my personal health information had to be repeated, yet again?

It’s ironic that the reason I was at the appointment was less important than what I learned about how I can be treated as a patient and as a human being. I left my appointment feeling I could have been treated not just a patient that must be examined, but as a human being who must be interacted with …

Here’s the thing: As a patient we are stripped of our power, our dignity, our choice, often through no fault of our own other than we require the services of a healthcare professional.

Where is the power, the sense of control, strength, and knowledge?

Where is the dignity, the sense of respect, worth, and esteem?

Where is the choice, the sense of alternate possibilities, options, and outcomes?

I don’t know what new affliction this is; it’s why I’m there to see the physician. I lack the ability to figure out what is wrong and how to fix it. However, I do know there is something wrong … so listen when I speak.

I don’t know why you don’t have all my health information already; there seems to be enough people and systems with who I’ve shared  that information. I lack the ability to figure out how to get the information to everyone without having to repeat it each and every time … that is, information that is so basic and yet so difficult for a patient to remember and repeat when we are in pain, scared, and uncomfortable.

I don’t understand why the place I go to get help has to be so uncomfortable,  intimidating, and degrading. I lack the ability to do much about any of this except to say loudly and often that there is a list of areas that could use improvement … warmer room, privacy, adequate “gown”, safe access to examination table, and access to my information, just to name a few.

Consider that, very often, as a patient, I am seen if not at my worst, certainly not my best when I walk through your doors. I am vulnerable. I am asking for help. As a healthcare professional, you have something I need, something I can’t easily get anywhere else … and we both know it.

If I had a choice, you likely wouldn’t see me again.