If you have a chronic disease and have ever wondered “will this ever stop” you are well on your way to some deeper questions. These were the thoughts that ran through my head as a scared 12/13 year old kid who fearfully dealt with Crohn’s disease in silence and alone. I’m 26 now and as I’ve grown up so to have my questions-save the very one I had as a kid: will this ever stop? It’s easy to shrug that off with talk of remission, symptom control etc but I actually think it’s one of those unknowingly profound question that kids have a knack for asking. To me it strikes at the overwhelming nature of chronicity- something I definitely didn’t understand as a child/teenager when I first heard “you have Crohn’s disease”, and I still struggle to understand it at times. To me these questions are all a prelude to the central question of is having a chronic disease mutually exclusive with being healthy?
Come to think of it, what is ‘being healthy’? I think that health is an evolving possibly unattainable ideal. I suppose it’s relatively simple enough to recognize behaviors that are healthy vs. unhealthy, but defining ‘health’ is tricky particularly when considering advances in scientific techniques. If you’re going to say well you know what I am/feel healthy, consider that a hundred years ago I’d just look at you and say yep it all checks out I agree you’re healthy! Fast forward to today and if I drew a vial of your blood and sequenced your genome it would likely reveal hundreds of thousands of mutations with risk factors abounding. These days, given time (and more importantly funds) for thorough enough examination, genetic risk factors and physiologic peculiarities can be found in everyone. Whether you feel ill or sick are a separate, albeit related, issues.
Consider wearing eye glasses as another innocuous example. These days we don’t typically consider wearing glasses as “unhealthy” but imagine how poor vision could threaten survival in days we were crawling around in caves. How would you be expected to protect yourself, hunt food, make fire with flint and steel etc? It is easy to imagine how poor vision in those days put people at an evolutionary disadvantage and if you surveyed our prehistoric ancestors I’m sure they would have considered poor vision as decidedly unhealthy. I am outlining these simple examples to argue that “health” is an evolving concept (a rather subjective one at that) that changes over time, rather than a well defined state. Furthermore, I would argue that its definition varies depending on the depth you are willing to study (genomic, epigenetic, chromosomal, cellular, tissue level, organ etc) and probably the culture trying to define it.
So what have been some previous attempts to define health? The simplest and earliest notions of health and disease (that I know of) trace back to about 400 BC and were defined by ancient philosophers and physicians. They contended that individuals had unique compositions of the 4 humors: blood, yellow bile, black bile and phlegm. Practitioners of humorism believed that disease was the result of imbalances between the four humors in cursed people. So I guess the gods really hold a grudge against us IBDers! Astoundingly, this or variations of humorism essentially dominated western medicine for a mere 2000 years give or take. The reasons for that are very interesting but beyond our discussion. It’s also funny to me how our knowledge of mathematics and celestial bodies outstripped our understanding of the human body immeasurably.
Here is where I cut out thousands of years of medical history. . .
Fast forwarding to today we have something the ancients would have marveled over. . . Google. A search of the definition of health produces a variety of responses ranging from the short and sweet “state of being free from illness or injury” to philosophical excursions such as those proposed by the World Health Organization (WHO). The WHO defined health as “a state of complete physical, mental and social-well being and not merely the absence of disease or infirmity.” They later added to this saying, health is “a resource for everyday life, not the objective of living. Health is a positive concept emphasizing social and personal resources, as well as physical capacities.” What the hell does that even mean?
In 2007 the utility of the WHO definitions were questioned in an editorial published in the Lancet whereby the authors explain how the WHO definitions were developed (read influenced) in an era, the mid 1940’s, where there was a sterling vision for ubiquitous world-wide health. Remember when I said the definition of health could vary by time and culture? More interestingly to me, the authors point to another definition outlined in a book titled The Normal and the Pathological written by a physician, Georges Canguilhem in 1943.
The authors summarize Canguilhem’s stance saying:
“He saw health as the ability to adapt to one’s environment. Health is not a fixed entity. It varies for every individual, depending on their circumstances. Health is not defined by the doctor, but by the person, according to his or her functional needs.”
It’s funny how different attempts to define health from the same time period lead to such discrepant results. But the more I’ve thought about Canguilhem’s framework the more I find comfort in what he’s saying. Unlike the WHO definitions (which I think exclude basically everyone from being healthy), Canguilhem leaves room for people like me to be healthy, and that is heartening. I wonder if he was a patient himself.
So what are that circumstances that change the landscape of my environment to which I need to adapt? The ones that I am cognizant of do not scare me but I am continuously learning how to positively accept these truths… There is no cure for Crohn’s disease. Given my history I personally never expect to experience a long term remission however I remain surprisingly functional. My future therapeutic management is really anyone’s best guess. I know I am increased risk for certain cancers. I know that any future children I have are at increased risk for CD (something I fear for them). I am one of the almost 60% of American patients who require surgery in the first 20 years of their diagnosis. I know that a second major abdominal surgery occurs in about 45% of American’s with CD. It is more likely than not that I face several more surgeries in my lifetime. *Data from Surgery in a population based cohort of crohn’s disease from Olmsted county, Minnesota (1970-2004).
That’s okay, everything happens for a reason right? (Sorry I couldn’t resist the dig at some friends with whom I have carried on that debate). Back to reality – do I think I can be healthy in spite of these problems?
Yes, at times.
I cannot really define what I mean when I say “at times I feel healthy” but I suppose I’m similar to those of you who said you know health when you see it. Here is a simplistic analogy that represents how I feel about being healthy in my situation. Think of Corona’s marketing campaign “find your beach.” Yes the beer commercials, I know you’ve seen them! They always shows these happy pretty looking people asking for a Corona which transports them to ‘their’ peaceful empty beach. I think it’s a brilliant ad campaign that has forever linked the beach with Corona in my mind. But what happens when you finish the beer? Well you open another one of course! Bad joke… you leave that peaceful beach and go back to reality right? I mean the commercials don’t really show us so I’m taking some creative liberties.
When I say I feel healthy it’s basically like I’ve found my beach. I know that its temporary and eventually I will be brought back to the cool reality of the porcelain throne but fortunately there are moments when I find peace of mind, my beach. My beach isn’t found in a Corona bottle, rather it creeps up on me quietly as I completely forget what is going on inside of me. I forget about the expensive medication I feel guilty for needing rest of my life, I forget my risk factors, I forget the surgery. I forget that I am living with disease. I know that this is attainable for someone in my situation. Is this being healthy for someone with a chronic disease? I couldn’t tell you where my understanding of health with a chronic disease falls on the spectrum of the WHO’s definition to Canguilhems but I know this state is possible. As I write I wonder if this is why I spent so many years avoiding the IBD literature, was I just trying to make it easier to forget? I would never willingly leave my beach but Crohn’s certainly has a say in my life. It’s like a passenger that I don’t really want there but am learning to deal with.
This post serves as a kind of baseline for my very limited understanding of health in chronic disease. I hope that someday after a long and fruitful career of measuring and working with patients on their health I will have a more complete understanding of being healthy with chronic disease. I would like to revisit this topic several times over my future to reevaluate, and probably laugh at, my attempts to understand if I can be healthy with a chronic disease.
So what do you all think? Is it possible to be healthy with a chronic disease? How do you define it?