Wednesday, February 23, 2011

Are You a Professional Patient?

By Amy, Spirochicks Contributor

This is Part I of a three part series on being a Professional Patient.

Over the summer I did a series of IV treatments that were extremely grueling and difficult. Every week day for 12 weeks I went to my doctor's office first thing in the morning, waited for up to 2 hours to be seen, spend 1 hour having them get an IV into my overly abused veins, and then spent up to 2 hours waiting for the IV medication to go in. Then I'd go home and feel horrible for a few hours from the medication. All of this took up so much of my day that it was difficult to get anything else done, including eating meals, let alone grocery shopping for my family, for example.

One morning in the middle of this grueling routine, while driving to my doctor's office for another round of all this fun, I realized that I was actually enjoying all of this! How in the world could that be?? It was painful, horrifically expensive, and involved sitting for hours and hours in an office with people who are some of the sickest of the sick. But,I realized that this was the most exciting thing I had done in probably YEARS, it was the most interaction I'd had with other people (and people who "got" me!), and I received a lot of attention from the staff as well as other patients for the ordeal I was going through.

This was totally crazy! I was ENJOYING this whole IV thing, even though it was physically, mentally, emotionally, and financially draining! OMG, I thought. Had I become a professional patient?!?? What did this all mean? Would I never get well? Would I spend all my time in my doctor's office, not socialize with anyone but my doctor's staff, sink all my money and time into treatments for years and years to come? Was this what I had unknowingly become? A professional patient?? This is EXACTLY what I'd always, always told myself I would never become!

A few months after this surprising thought crossed my mind, I was out to dinner with some other Lyme patients. Of course, the topic turned to various treatments and supplements. There is nothing like this topic to get a bunch of Lymies excited and chatting away. We are all so dedicated to finding the next thing that will help us, it always gets us rev'd up. Several people commented that they had a long line of treatments in mind that they wanted to try next, and perhaps they were kind of professional patients. And that's when it hit me. I didn't have a list. For once in the 10+ years of being very sick and working doggedly to learn about every single treatment out there in the hopes of finding the right combination of things to help me recover, for once, I didn't have a single thing in mind to try next, let alone a long list of things to do next. So, I thought, perhaps I'm not a professional patient after all? Perhaps I am ready to move on to the next phase of my life, where I'm not chronically ill and always chasing down the next treatment to do in order to hopefully, eventually, fully recover. In all honestly, after finding myself ENJOYING those IV treatments I did over the summer, this thought comforted me.

But, I wondered, how much do we, at least on some level, keep ourselves from full recovery by being a professional patient?

I had no list of things to try next for awhile there. It's now been about six months now since I was doing those grueling daily IVs, and I have to say that right now, I've got a list of six new things I plan to add into my protocol in the hopes of eventually reaching full recovery. The good news is that these things weren't my idea, but things my doctor wants me to add into my protocol. But, does it matter if it's my list or my doctor's list? Does it put me back into the mindset of the professional patient? My hope, of course, is that these six things get me that much closer to full recovery, and then whether or not I'm a professional patient will be a moot point.

Interested in seeing if you are a Professional Patient? See Part II: Working on Your Degree to Become a Professional Patient?


Anonymous said...

Sorry but I gain no pleasure from having to see doctors, from having to take multiple things daily and still seeing the damage done by an infection that was not recognized for years and years.

For some of us the illness will remain chronic no matter what we do, we have to accept there will be permanent limitations and be happy with where we are now, maybe if caught when you are young enough to repair before too much damage is done you will go back to your yearly PE being the only doctor visit you have, no one really knows.

Amy said...

Thanks for the feedback, Renee. I don't gain any pleasure from seeing doctors and taking handfuls of pills daily either. My article is trying to speak to the mindset that some of us may fall into without realizing. A mindset that may perhaps keep us chronically ill, which I know none of us want to be.

What I was surprised by this past summer was how much I was enjoying the company of other adults at my doctor's office while doing all those awful IVs. It surprised me so much because I was completely NOT enjoying doing all those IVs and I had previously been too ill to even realize I missed being with people.

But, the IVs were working and helping me to get better, and after several weeks on them I started to enjoy seeing the people in my doctor's office (who are all very nice, which I know is not true in all doctor's offices) and that completely freaked me out. How could anyone enjoy anything about being chronically ill and having to go to their doctor's office daily for weeks on end to do painful IVs?

That's when I had the thought that perhaps I was becoming a professional patient. I'd heard of people who others referred to as a professional patient, like a professional grad student, someone who never finishes their degree but stays in school forever. The idea of becoming a professional patient, someone who accepts that their illness is lifelong and they'll never truly recover, scares me because I believe that once we accept that mindset then it becomes true.

I hope this helps to better explain the intent of my article. I am in no way meaning to make light of any aspect of our severe, chronic illness.

keith (themadchemist/spirotech) said...

Personally, I think the idea of professional Patient is too similar to the term "drug seeking behavior". It sounds MD created, a nice way of saying psychosomatic.


Of course I'm a patient, and I better be a professional about it, because 98% of the medical profession is against the fact that my disease does exist.

It sounds as though your are very lucky, and have found a supportive MD environment. Your are a VERY LUCKY person for this. Not all Lymies experience that. personally I've see 45 Dr's. Been thrown out of 2 and walked out of many. I trust 2.5 of the 45.

No one know what this disease is and/or how to treat it. Not to mention the problem that everyone seems to react differently to the various treatment options.

No One says when they are a kid. Gee, I want to grow up and be on IV antibiotics (I know I didn't, but I still put up with a PICC for 4 months). But we do what we must to survive. I think your feeling of joy, even in the face of horrible Pain, is the optimism of feeling I'm moving towards wellness.

We Should never beat ourselves up for searching out being well.
I feel that you see being a Pro-Patient as a negative. I on the other hand see it as a positive.

We seek treatment not as junkie's do.
We seek to be as we were. Whole and complete, able to provide for ourselves and our families.

I gladly except the title Pro-patient and will remain one until the last Bb rolls over and dies.
Then I become Pro-advocate and educator.


Amy said...

Hi Keith, thanks for your response. I sense that my article isn't making the point I was trying to make very clearly. I'm simply trying to highlight that our mindset may play a role in us continuing to be ill. The thought that, if we always see ourselves as ill, will that in any way contribute to us remaining ill? I don't know if it will or not, but I'm trying to explore that idea.

What happens if we view ourselves as well even while we're still sick? Will that impact our recovery in any way? Will it help us to achieve our goals of full recovery? Will it cause us to do anything differently that will help us heal? What if we always view ourselves as a patient and always sick? Would that change the outcome at all?

I like your term Pro-Patient. That's a good term for what I am. My use of Professional Patient here was just a take off from the term that I had (perhaps incorrectly?) assumed that everyone had heard of, the Professional Student, someone who never gets out of grad school. So, my only meaning by the use of Professional Patient is someone who never stops being a patient. I hope this helps to explain the intent of my article better.

keith (themadchemist/spirotech) said...

One small note I'll add.

Often when asked about Bb I reply.

"this disease has been one of the greatest gifts I've ever been given"

people look at me strangely. Lymies and not alike.

If you are biblically spiritual. read the book of James.

We are to take joy in our afflictions as they lead to great wisdom and an opened empathy. This disease has changed me for the better. Once I'm well, I'll be a better me then I ever was without this experience.


Amy said...

Keith, I would not look at you strangely if you said that to me! I completely agree with your point of view that Lyme has or is making you a better person. Great things come from adversity. It gives us a chance to grow in ways that nothing else can.

I have a child with special needs and while he can be very challenging to deal with (especially while also dealing with a severe, chronic illness), I wouldn't change him for the world because he has taught me so much that I never would have learned from a typical child.

keith (themadchemist/spirotech) said...

Hi Amy

I completely get what your saying. Negative mental attitude is THE GREATEST factor in recovery.

And yes I could easily have been a pro-student. I spent from 94 to 2005 in school. The chose teaching rather then Pharma. Again people in general see being a professional student as a negative. Stop, Enough, get a job!

I've heard it. but from the student prospective - who are you to say how I live. I like learning. and believe me I started college at 30 so I've broken my back working. My first 5 years of undergrad I work 40 hours a week at Walmart.

My fear is that this term Pro-patient can be looked at as a positive or negative.

The difference is where you dwell.

If your spirit dwells with the sickness and its negative aspects then a Pro-patient is more a hypochondriac, Always search without being informed.

On the other hand if one's spirit dwells with the aspect of truth and learning, searching knowledge as a student. The Pro-patient is more a self-aware health care provider. And in my experience Those who take a pro-active part in their treatment, get better faster.

Your point is Very Valid. How we look at ourself is much of what we are.

to steal a few of my fav lyrics

All we touch and all we see is all our lives will ever be
-pink floyd

Over thinking, over analyzing separates the body from the mind.
Withering my intuition leaving all these opportunities behind
Feed my will to feel this moment urging me to cross the line.
Reaching out to embrace the random.
Reaching out to embrace whatever may come
With my feet upon the ground I lose myself
between the sounds and open wide to suck it in,
I feel it move across my skin.
I'm reaching up and reaching out,
I'm reaching for the random or what ever will bewilder me.
And following our will and wind we may just go where no one's been.
We'll ride the spiral to the end and may just go where no one's been.

Spiral out. Keep going, going...
- Tool

Shine On

breathbybreath said...

I really get what you convey in this post. It’s easy to become so accustomed to something, be it illness or something more pleasant, that we start to identify with it to the point of it overtaking the aspects of ourselves and our lives that were present prior to illness. It’s a fine line between advocating for ourselves/trying to get to that optimal level of health and letting the illness become larger than we are/overshadow us.

I believe it’s important to realize that, sick or well, we are already whole. It may feel like illness takes away from our wholeness, as loss of health is certainly a loss, but it does not make us any less than we were. I hope that made sense :) I’m not usually awake and functioning at this hour.