Monday, January 10, 2011


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.


Allison said...

I loved your 6th paragraph.  Things like "Rule #2" exist for a reason--because we are experts on our own abilities and limitations.  That lack of respect from a medical professional is unacceptable.  Whatever happened to "do no harm"?  I hope you are swiftly able to regain the ground that was lost as a result of this appointment. said...

I'm so sorry.

LynnM said...

This person and this person's supervisor should be given this post.  Can you get future practitioners to read and acknowledge your limitations, and note the damage caused by exceeding your boundaries?

Rotten you have to suffer this.

Jocelyn said...

Oy.  This makes my blood pressure go up, and i'm not the one who's suffering the consequences of blind arrogance!  I think that LynnM is right, and that it would be worth documenting this with the person's supervisor (one more hour of your life), although I'd add the caveat that it's probably worth waiting until the person is no longer your only care option.  I hope that you recover quickly from this, and I'm sorry that you have to be going through it in the first place.

Kitten said...

I feel like you should be okay with shouting NO (top of lungs shout) as soon as the jerk tries to move your limbs.  I agree with the complaint, too.  And maybe the medical board.

Julia said...

I'm so sorry. I hope you can quickly find a replacement.

WarmSocks said...

That really sucks.  Throttling the person sounds appropriate.
Best of luck in finding a good replacement.

Diane said...

Maybe you could arrange to have this person rolled down a very large hill, numerous times, in the hope that they will then be in the kind of pain that they inflicted on you.  

Definitely get someone else.  I remember telling a doctor (when DD was in the hospital) that he was not to touch my daughter again.  That parental order was enforced by the staff and his supervision.  This may be a case of taking someone with you as an enforcer (rather than as an advocate, you easily do that for yourself).  

AlisonH said...

My stars, Lene. (How did I miss this earlier today?!) I am SO sorry.

I'm sitting here hoping there is any chance that that person could come around and have the grace to apologize, if they really knew. If not, they are beyond words I could politely use and I badly want to protect you from them. If only I could.

LynnM said...

I came back to reread and spotted something I'd missed on first reading: all this for AN ASSESSMENT?
Medical professionals who get mad when they aren't allowed to hurt you while ASSESSING you need to be reported or shunned or both.

k said...

Okay. Erased whole reply. Don't want nightmares.

AlisonH said...

I was stewing over this while heading for bed last night, by the way, and told my husband what I'd read. His reaction was, that doctor MUST be reported. I said, but that's the only one she can go to. DH's usually the most laid-back guy, and the depth of his anger surprised me: "They MUST be reported," he reiterated, and then went on to say why he felt so strongly that way: it was abusive, it was controlling, it was utterly lacking respect as well as compassion for the patient, and that behavior had to be stopped and that doctor reported.

That said, you're a big girl and can make up your own mind about what you want to do. Just know that if you do report them, you've got a lot of support on your side.

AlisonH said...

p.s. And support if you don't, for that matter.

Anonymous said...

I just read thsi blog to get the 'back story' on your latest one.  So let me get this straight:

A) This person ignores your request NOT to have something done to your body.


B) Does it anyway, causing you significant injury.

That's a violation, an assault!!  I am off to read your latest blog now but I <span>sincerely</span> hope you're reporting this person to the appropriate medical board in your country!!

Gaina said...

**sigh** I forgot to long in. The 'Guest' at 18:36:49 was me :P