When Hope Collides With Hope

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I’ve been a part of many Facebook groups dedicated to chronic illnesses over the past few years. Some were big, some were small; all have grown. I have never really stayed in one place for too long; I just get really frustrated with people. Although I consider myself an extrovert, I think many of my personality characteristics are more similar to those of an introvert — I guess I’m borderline… introvert. It’s a weird balancing act, to say the least.

Certain things people do really frustrate me. Usually if it’s just a one-time-deal, I don’t let it bug me, and instead just ignore it. But when someone repeats something over, and over, and over again, well, I become greatly frustrated; so much so that I usually end up taking measures to remove any lingering frustration from my life – removing myself from the shared group, or un-friending the offender.

Now, I know this probably reflects poorly on me. It may seem on the surface that I have issues with anger and difficulty dealing with frustration; or that I’m a self-righteous douche bag who cannot stand the sight of another’s fault, but probably has no problem flexing many of his own, when push comes to shove. And that may be true, but I don’t think its anything too serious or pathological. Why? Well, because I always try my best to resolve the situation before I ‘take my ball and leave’; I’ll message the person and organically bring up the appropriate conversation as a Segway towards my real agenda, with hopes that we can come to some resolution.

What I’ve found is that often times when someone repeats a poor behavior, or has a really negative attitude, or  a really narcissistic attitude, they have NO clue; and if they do, or if its brought to their attention, they think it’s not only perfectly okay for themselves (citing many good reasons for their behavior), but desirable for EVERYONE.

Being chronically ill with a rare disease, I often turn to online groups as a way to connect with the few who share my struggles. There’s nothing wrong with this. In fact, I’d encourage it for those of you who don’t already do so. However, the internet provides a level of anonymity that seems to bring out the worst in people.

In every day life, there are certain social constraints and non-verbal social cues that help guide behaviour in a positive direction. If you offend someone, for most of us its pretty obvious. Their faces will change, their posture, their tone; they’ll cut their sentences short and stop making eye contact. This creates an awkward situation few enjoy; most remedy this by either apologizing or being extra nice. Physically seeing the results of your actions can also produce empathy and regret on a more visceral level; you’re reminded how poorly you felt when something similar was said or done to you, and so seek to make things right. This just doesn’t happen on the internet (at least not with a fraction of the frequency).

People can be mean to their heart’s content, safe behind their computers, tossing epithets every which way. The visual non-verbal social cues aren’t present so people not only don’t catch on to what their doing, but are ‘free’ from the social burden of empathy.

The one ‘frustration’ I encountered the most in the ‘chronically ill blogs’ was the disdain towards doctors.

People were just pissed off at their doctors for not understanding ever aspect of every facet of  their situation. And I know how that is; I’ve had doctors laugh in my face and call me a liar many times. And a certain degree of resonant anger is appropriate. What I encountered time and time again, though, was members verbally degrading not only particular doctors, but doctors in general; sharing stories of themselves accosting a doctor who didn’t agree with them, or yelling at a nurse. And you know what, I can even condone that level of behavior. If a doctor laughs in your face, calling them a dick is permissible. But this disdain for our medical professionals often reached such dramatic heights that uneducated (or barely educated) members claimed to be ‘smarter’ than every doctor they’ve encountered — and they literally meant smarter in the most strict sense, not simply regarding the information related to their specific diseases. Or nurses who went to community college saying they knew more about reading x-rays and MRI’s than a radiologist — again, in the most strict sense; they claimed to know EVERYTHING about the entirety of radiology.

And this always bothered me. I’m sure it bothered many people, but as I shared above, I am easily frustrated by these types of things. So I would try to talk reason into them. I tried to explain that calling doctors stupid to their faces will get you nowhere – in fact, its pretty ironic. I told them our hopes were just colliding with the hopes of the Doctor, and that over-reacting is pointless.

Doctors were once lay people, too. In their undergraduate years I’m sure they hoped they could achieve the right grades to qualify for medical school. They hoped to do well on their MCATs and do well on their medical school interviews. When in Med school, they hoped they would pass everything and finish on-time. Hoping they would get into their choice residency and eventually a stellar fellowship at a grade-A hospital where they could actually make a difference was probably a chief concern for many years. Much like ‘us’, they worried about money, and hoped they would one day earn enough to pay back their loans. And for many, I’m sure there was hope for others; hope their skills could be put to use in a meaningful way. As they began practising (especially ER doctors), I’m sure they hoped everyone who came in would be easy, dreading the burden of another death, or more suffering. I’m sure they hoped the ‘tricky’ and ‘hard’ patients would stay away (when they did come in, the fear from the emotions and baggage brought on from seeing so much suffering triggered defense mechanisms: they kept them at arm’s length; almost coldly indifferent). Many probably think about their children, and their mortgages, and their vacations. Many will work to move up in their hospital; to publish ground-breaking papers. Amid all this hope, though, there is usually little room to consider the hopes of others — the least of which being the complicated, annoying, and often ‘weird’, chronically ill patient. The patient who presents with atypical symptoms — even for their own disease. The patient who is rude and condescending, and acts as though all the hopes and hard work doctors put in to getting where they are is far easier than they make it out to be – that anyone could do it.

As chronically ill patients, we all share one main hope: that we’ll meet a doctor who can ‘fix’ us – even though almost all of us know this just isn’t going to happen (probably…).

Every time I hear someone talking down a doctor, one of the first things that comes to mind is this: hope colliding with hope. The doctor whose hopes are no less, and no more important than the patients. But whose hopes inadvertently and consistently collide with those of the chronically ill.

Rarely are our appointments over the internet; on a Facebook page, a blog or a YouTube comment section. Instead, we meet face to face. We see and feel the social cues brought on by the tension created from temporarily conflicting agendas. However, we’ve spent the last few years, at minimum, trashing not only our chronically ill peers, but doctors too; we’ve primed ourselves to act poorly, as if ‘hiding’ behind our keyboard in a neo-virtual world. And so this self-fulfilling prophecy we’ve created is free to  run wild: were rude to the doctor, who in turn returns rudeness, shrugging off our symptoms because they haven’t the time or patience to deal with difficult patients (they have their own hopes, remember). We leave feeling like no-one believes us, and no-one is willing to learn; that every doctor is rude and stupid and were smarter than everyone ever. Period. We log on to Facebook, or our blogs, and rant about how stupid so-and-so was. And how if we were the doctor, we would never treat anyone so horrible (cue the irony).

And the cycle just continues to go on, unabated. And people like me, who are frustrated by this, are painted with the same broad stroke the doctor is painted with. Samsara.

(disclaimer: I have my faults too. Many, many faults.)

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