You don’t look sick….Well Thank You

Let’s all be careful with opinion pieces

The strictly opinion pieces I write about Crohn’s/IBD are by far the most difficult to articulate. I can whip out a bag review, tips on going to the doctor or an IBD journal club post quickly but when I write an opinion piece (as this is) I do so conscious of the fact that my opinion is just that, MY OWN. I am far more scrupulous because anything can easily be misconstrued to represent the opinions of the larger IBD community. I hope you find what I write helpful but I won’t pretend to be a “voice of the IBD community” or an “IBD patient expert.” These often self-bestowed titles elevate individuals to a position where their opinions are more likely to be disseminated and may have the unintended consequence of actually being adopted as the best practice in interacting with someone with IBD. Any piece explaining how people with IBD should or should not be treated are opinion based (albeit well intentioned) articles that tend to oversimplify an impressively diverse community.

So what’s this roundabout disclaimer all about?

Well in one sentence its how the countless articles listing “things that should never be told to someone with IBD” are oversimplifications based on the opinions of a few individuals which have been misconstrued to reflect the feelings of the larger IBD community. Okay, lets break this down. These “say this not that” lists have all kinds of statements ranging from unsolicited diet advice to tales of snake-oil ‘cures’ of IBD. One statement that finds itself onto virtually every such list, is the classic “you don’t look sick.” Widely spread publications (i.e. Here, Here and Here to list just a few) have turned this phrase into something virtually ‘unmentionable.’ Why? Likely because several prominent patient advocates have griped about being told they don’t look sick. That’s fine but their opinion pieces have consequently turned an innocuous statement into a kind of insult to anyone with IBD which is why one must be so careful in writing an opinion piece.

I cannot count how many times I’ve been told “you don’t look sick.” Most recently I was told at my doctor’s appointment (a week ago) that “you don’t look sick!” This has never bothered me and on the contrary I view the observation as a true compliment. To me it’s a badge of honor and something I am proud of. Yes dragging myself to that doctor’s appointment was the only thing I was able to do that day. Yes before the appointment I was light headed in the shower, yes I had to empty my ostomy bag all night and day, yes I was short of breath walking up a flight of stairs and yes it took every ounce of energy to get out of bed. The fact that I felt this way, and do frequently like so many with IBD, and was still told I don’t look sick speaks to strength. The fact that anyone with IBD would be told “you don’t look sick” is a testament to the resilience they have developed under conditions that would overwhelm most.

Consider the alternatives: “You look really sick”

The first, and most obvious, alternative to this phrase is the exact opposite, being told “you look really sick.” Yes I have been told this plenty and I can tell you it’s more alienating than being told “you don’t look sick.” Do you want to hear that? Do I ever want to hear that again? For me, the answer is unequivocally no. I know how I feel, I know what the blood work shows, I have seen photos of the ulcerations throughout my GI tract, I know how many things I have stacked against me and I know that no one really sees all the horrible symptoms of IBD save myself, my doctor and a few nurses.

I also know how lucky I am to have IBD. Yes, lucky. I don’t have a disease which robs me of my peripheral movement or one that corrupts my thoughts, one that guarantees my offspring will suffer in the same way or one where I have a disfigured external appearance causing parents to shield their frightened children from view. I have a disease where I am lucky enough to be told “you don’t look sick.” Millions of others are not so fortunate and for me it has been important to remember that in order to prevent self-pity.

In no way do I mean to belittle IBD as a diagnosis. Although uncommon, people do die from IBD. I was told that I almost died from sequela of Crohn’s disease, and mortality is only one measure of disease severity. Anyone reading this likely already knows the physical, psychological and financial repercussions of living with IBD and how taxing it is for patients, families and yes your GI doctor as well. Personally I only need my family and close friends to be privy to what I go through as validation and sympathy. Beyond being extended basic protections (i.e. the ADA, Ally’s law and paid sick leaves) I need very little from society in the way of sympathy.

Another alternative: The silent treatment

The other alternative, arguably more difficult to deal with than the first, is not being told anything by your family and close friends. Silence leaves you in ‘hidden in plain sight’ and alone. For the first 6 years of my life with Crohn’s I was told nothing. People never said you do or don’t look sick because they had no idea anything was wrong and I was just hiding. Keeping these emotions bottled up breeds resentment of ‘healthy’ peers and to say this is damaging is an understatement. In fact it has taken me years to recover from the bitterness I accrued from years of being told nothing on account my own silence. Having no one acknowledge that you are sick makes you question whether anything is actually wrong and more dangerously whether this is somehow your fault.

Context matters

I’m adding this as a brief addendum because one of my Twitter amigos rightfully pointed out that there are situations when being told “you don’t look sick” is as he put it “smack worthy.” If I am a good employee and one day I tell my boss that I need to go home I am feeling very sick and he/she turns around and says “well you don’t look sick” then you better believe I will be upset. And yes to those of you without IBD this really does happen to people all the time. Do we really need to go through the gory details of active IBD or defiantly march you into the bathroom to show you how I exactly I feel for people to no longer make this observation? I bet that what they would learn would shock them. Yes, IBD is an ‘invisible disease’ which goes completely against the grain of what society has described of what being sick means. We don’t always mope around with a thermometer in our mouths looking super pale and with a fever. Most of us try really hard just to look normal so please if we say we are not feeling well take our word (or better yet a doctors note explaining that you do have IBD) as the truth and don’t probe further.

So what what does all this mean?

I have been undergone each of the three situations above and they’ve elicited different emotions ranging from pride when someone tells me I don’t look sick, anger when someone tells me I do look sick and alone or bitter when nothing is said at all. My problem with the “say this not that” lists is that they are invariably based on a single or several patients OPINIONS. Learning to interact with a community as diverse as the IBD community cannot be done by following a list you read in CBSnews, or from another blogger. Interact and treat us as individuals rather than lemmings amidst a community that you learned about by reading a “never say this to someone with IBD” list. While its safe to say that most comments are probably better kept to yourself, please don’t think that abiding by an online list adequately prepares you to navigate the waters of a community with opinions as varied as their disease presentations.


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