Boundaries

   

Recently, I had the unmitigated joy of meeting a new medical professional. As part of this meeting, a bit of an assessment of my upper body - particularly shoulders and neck -was deemed necessary. I made sure I did my usual thing, told them that due to various injuries, damages and fibromyalgia, they ought to treat me like a rotten egg (it’s a handy shortcut description). I furthermore invoked Rule: #2 that I trot out whenever anyone is in a position to lay hands on me, namely that should they wish a part of my body - say an arm, a leg, etc. - to be moved into a particular position, ask me and I'll do it, as when other people move my limbs for me, it's easy to take the movement beyond my boundary, which will hurt for days.

And now for the interactive part of this post, in which you get to guess how well that went. Your first clue is that aforementioned "unmitigated joy" may have been sarcasm.

I had to twice reiterate that bits of me should not be encouraged to move beyond where I had moved them and let's just say that the end result of this assessment was that I incurred a rather significant injury of my neck and shoulders, characterized by an extreme seizing up of every muscle and tendon available. Essentially, I now have whiplash all over.

But it doesn't stop there. Because when I continued to participate in the process, politely and very Canadianly taking control of my medical care - I don't just preach self advocacy, I practice it, too! - aforementioned medical professional took it as a personal attack and got mad.

I am in the lucky position that most of the medical-type people I've encountered in the last decade or so have been good team players, people who listen, pay attention and fully support an empowered patient. However, every now and again you run up against somebody who believes that they’re the expert and you should do what they tell you (my friend Beth is an expert in this type). Furthermore, if anything you say does not fit into their knowledge base, they dismiss this as impossible to be true so their reaction becomes to either treat you as if you're crazy or to act as if you're trying to impugn their integrity. This is also the type of person who will diagnose you as 'challenging' if you ask questions. They have their place - they are excellent if repairing or rehabilitating a simple fracture that will heal completely, leaving no long-term effects. However, they have no idea what they're doing when it comes to someone who lives with a chronic illness.

When you live with a chronic illness for any length of time, you become an expert in what it does to your body and your life. You know what you can do, what other people can safely do to you and most definitely, you become an expert in what shouldn't be done. When a medical kind of person treats someone who has a chronic illness it is beyond essential to approach it knowing that they are dealing with that person's reality. Not the medical person's version of their reality, not what they accumulated through books or practice about what Chronic Illness A or B usually does to a body and most definitely not ignoring expressly stated instructions.

It all boils down to respect. Respecting that we are an expert on our life - not in their specialty, but on our life - respecting our experience as valid, regardless of whether it fits into a specific paradigm and let's face it, just plain respect for another person. Because that's when these people are treating - not a case, but a person and every individual is different. And every person's experience of their illness is different.

Which is all very theoretical and that’s the only way I can write about this. Because I am sore, upset and so angry I want to throttle this person. Only problem is, it won't get me back the time I've lost to sitting still and healing and besides, for now they are my only option. I am, however, in the process of finding a replacement.