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Nov06

What a pain!

Tuesday, 06 November 2012 Categories // Health, Living with HIV, Opinion Pieces

The role of the patient in health care . MT O’Shaughnessy and a painful episode which leaves him remembering we have a job to do in managing our health – and our doctors.

How you know you might be a writer: Sitting in my living room at 4 in the morning and while deliberating the process of cutting my own foot off, specifically how much mess it would cause, I realized that this moment was giving me an idea for my next article. 

And no, this is not going to be a ‘how to’ for limb removal.  

I can’t tell you how often I hear ‘times have changed’ and not once has it really truly sunk in for me.  Not until recently.  

Used to be, as I remember it, that going to a doctor as a kid involved them discussing what they thought was going on with me.  Then tests to confirm and a course of action.  And before I so much as considered leaving the room a quiet “don’t forget to book a follow up, I’ll just tell them to start the process for you”.  

These days?  Not so much. 

A couple of years ago I ended up with neuralgia in the left side of my face, around the jaw.  And I’ve got to say it was intense.  I lost sleep, I started to lose my mind.  Over a year of drugs being prescribed and tests ordered and… that’s it.  It was during this time I realized that after I left the room I ceased to exist.  My problem had been addressed. Not fixed or resolved, but addressed and therefore… we’re done. 

It is now our, the patients’, job to order the follow up appointments.  It’s our responsibility to come back and ask for results.  They aren’t brought to us anymore.  Which is fine, overall, but it kind of needs re-stating.  

We have a job to do in managing things in our health care. 

This has been a great example.  I just took a pause in writing this to go see my doctor again and have words.  Only we had words at each other.  He finds me defensive and irritated, I find him angry and defensive.  In other words: we’re a pair, really. 

There is this moment when talking to a doctor that I can’t get my head around.  I know I should, but it just eludes me.  When they give me a suggestion for a course of action, a momentary pause and we just … look at each other.  I keep thinking… is that it?  What about if that doesn’t work?  What about if it does?  

My recent bout of whatever in my foot (they’re unsure but assume it’s gout… note it’s not diagnosed as such) has been a reminder of this.  I’m used to feeling insignificant in parts of my life and I freely admit to having a preset toward anger in my thinking when I walk into my doctor’s office.  But there are things I can do to resolve this. 

When the conversation is done I’ve got to make sure I know about the ‘and then’.  What happens next.  Even if things are resolved this time, ‘fixed’ as it were, what happens if this is a recurring issue.  What do I do next time?  And if it doesn’t fix things, what happens then? 

For me knowing a timeframe to consider – if nothing is different in X number of hours/days/etc – helps.  I often find that component missing from conversations and I need to remember to ask. 

Part of that has to do with the workload doctors have.  They know it, they think it and they probably assume it’s pretty much obvious.  Only problem being : it isn’t to me.  So my doc isn’t trying to screw me over, he’s more than willing to answer questions like this… if I remember to ask.  

I’ve taken to creating notes for myself.  And I checklist myself before I go into a meeting and then again before I leave.  At one point it seemed ridiculous.  Now it’s pretty damned much the only way I’ll be sure I walk out of an office knowing what is going on. 

I think it’s hard, sometimes, to articulate that very real fear when leaving a doctor’s office.  You know they got something out of it, they have a plan or idea of what’s going on… but for you there are only lists of pills, specialists and ‘to do’s that you have clutched in your fist as you walk out of the examination room.  Sometimes it’s hard to find a way to express how bewildering that experience can be… did we just fix things by talking about them and this is now a known issue… or is there more. 

I often waffle between feeling like an ass for stressing certain points so much with my doc and, at the same time, being so fucking annoyed that I have to because of how often I feel left out of the end result.  

So I’m learning how to talk with, not at, my doc.  It’s not easy.  But it’s helping.  And I’m asking him questions on how to do this better.  But I’m also learning how to state what I need to get out of my appointments so I can have the feeling that something is going on WITH me. 

Where the most trouble appears, for me, is pain management.  I’m not good at it.  I have had a history of underreporting pain and now, now I sometimes wonder if my doc isn’t looking at me and thinking “Good freakin’ lord, I GET IT…”  Because my fear is that I’m not being taken seriously, which in turn ends up with me babbling about how bad things are. 

Going from a regular life to suddenly having pain that is mindbending, depression inducing, horizon swallowing in its completeness and fullness… makes you stop and realize how hard it is to explain.  How exactly do you quickly rattle off that “my life just stopped on a dime and hasn’t moved, since” to a doctor in such a way that it makes sense to them without obscuring things. 

Again, it’s where talking to my doc and outlining what I want them to hear.  And what I need to say, specifically, to get their attention.  If ever I feel rushed out of the room or meeting, well those are doctors I’m no longer with.  I know there are many many other people in the waiting rooms out there, but I need to be sure that I – Mike – actually got something out of going to see my doc.  If there is a point at which I feel like a widget, it’s time to either stop things and straighten them out.. or at worst, find a new doctor. 

So far this doc and I are training each other fairly well.  I’ll eventually get over my sense of being betrayed by the profession that, however irrationally I might be in believing this, hasn’t been always able to simply look at things once, nod and sagely make it all better. And eventually he’ll remember that all the conversation needs to happen in the room and not just inside his head.  

Of course I figure we’ll hit that point approximately two hours before I drop dead.  But those two hours… 

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