If you're living with a chronic illness, you're in the right place.

Saturday, May 10, 2014

Chronic Illness Isn't a Competition

7:48 AM Posted by Tiffany Taft , ,
We see all sorts of illnesses in our practice.  I've talked with hundreds of people who struggle with daily symptoms of varying location and severity, sat with them as they cried with frustration, anger, or even joy.  I've heard horror stories that include the medical field, the workplace, marriages, and friendships.  If there's one common theme among these stories it's that, regardless of the diagnostic label the person has, everyone...EVERYONE...struggles.  So, please allow me to step onto my soapbox for a minute.


I operate from a biased sample because the people I see are seeking help from a therapist to cope with their current situation, so they may be more distressed than the average Joe (or just more willing to accept some help and put the social stigma of mental health aside).  But I also read a lot of message boards and blogs, watch patient videos, and conduct research all to better understand the perspectives of the patients I see.  Not to mention that I, too, live with a chronic medical illness.  There's something I've noticed when it comes to what I like to think of as "illness cousins."

Over the past 20 or so years the medical community has differentiated illnesses that have "organic" root causes and "functional" root causes.  An example of an organic disease is rheumatoid arthritis, ulcerative colitis, diabetes, or systemic lupus erythematosus.  There are definitive diagnostic tests and biomarkers.  When you look at the colon of someone with UC, it's generally not pretty.  Each of these diseases has a cousin, in that there are people with similar symptoms of the organic disease but lack any identifiable organic process.  These are the functional syndromes.  Rheumatoid arthritis and fibromyaglia are cousins.  Crohn's disease and irritable bowel syndrome are cousins.  You get the idea.

I've come across comparisons between the cousins on more than one occasion.  It usually goes something like this:  "There's no comparison between [functional cousin] and [organic cousin].  [Organic cousin] is a disease that causes [insert list of symptoms].  [Functional cousin] doesn't cause any damage.  Sure, [functional cousin] causes distressing symptoms but they're no where near [organic cousin]."

Is this inaccurate?  No.  At face value, this is entirely factual information.  Functional syndromes don't destroy the tissue of a person's joints or their esophagus or their pancreas.  They don't require surgeries (usually) or treatment regimens that come with fatal side effects (again, usually).  On the contrary, most functional syndromes have crappy pharmaceutical treatments that produce results only marginally better than the placebo effect and work in about a third of patients.  This leaves large numbers of people without many options to treat chronic daily symptoms that may significantly impair their day-to-day life.

Think about what that might be like for a second.

To be fair, I should mention that this differentiation also happens among the organic illness club.  I've had a lot of people tell me they've been told "well at least it isn't cancer."  Also, not helpful.

People living with functional syndromes are more likely to experience stigma because their illness isn't perceived as "real."  There are many studies on that including here, here, and here. Patients with fibromyaglia are at increased risk of suicide.  In one survey, 38% of irritable bowel syndrome patients being seen in a gastroenterology clinic had contemplated suicide (compared with 3.7% of the US adult population and 17% - 30% of patients with their illness cousin, inflammatory bowel disease).  IBS patients cited feeling hopeless because of how severe their symptoms were, how much they impacted their life, and lack of adequate treatment.

So it's really frustrating when I see comparisons between a functional syndrome and its organic cousin that essentially dismiss the former as a means to elevate the latter to a more significant status in the chronic illness world.  I understand the need for each of our illnesses to be recognized by the world and not be mixed up with a completely different condition.  I get that.  I've been frustrated when I see major news outlets get IBS and IBD mixed up.  But it's not because I view my plight as worse than my IBS cousins'.  I used to, early on in my diagnosis and before I went to grad school.  Maybe my perspective has changed because I've seen a lot of patients with IBS, including some who've needed TPN to maintain their weight because they can't eat from pain, who have to drink the wonderful gallon of GoLytely bowel prep once a month so they can poop, or have even had their colon removed due to complete colonic inertia.  We do know that prejudice and stigma are reduced by communication and spending time, especially time working toward a common goal, with those we've deemed as outsiders.

On paper, IBS or Fibromyalgia or Chronic Fatigue Syndrome aren't as "bad" as their organic cousins.  But it's important to look beyond that and appreciate the suffering that comes with any chronic condition.  It's not a competition between functional and organic.  They all suck, in their own way.

Best,
Dr. T.