So this!

I have been moved to write for a few reasons.. primarily, I saw a post on a palliative care newsfeed and it is wonderful!   (More on that in a bit) I was recently praised for my writing style, and encouraged to write, not for other people, but for myself (which I kinda do, but it is nice to have it said to you ;-) ) and, I have a post that is in draft about the year so far - as it has been a monumental one.  I will fix it and post it soon, but this out of order post will take precedence as it brings up something that I have issue with, especially in the healthcare industry, and the media are also villainous in their propagation of this. Use of language.  I do not mean cursing, I mean use of words that subjugate and turn people into victims.  Applying words in such a way to evoke pity, not empathy. 
The trigger for this post is a paragraph out of this phenomenal obituary (Obituary of Tim Schrandt).  The impetus for writing was this sentiment:

"Tim led a good life and had a peaceful death - but the transition was a bitch. And for the record, he did not lose his battle with cancer. When he died, the cancer died, so technically it was a tie!"

I have talked about the power of the words used in healthcare before - in relation to myself - diabetes and I co-exist in this body - there is no 'victim of diabetes' here!  And I teach anyone I work with who will listen about the language they use, and lack of control and autonomy is usually what escalates heightened behaviours in our more challenging patients.  For example, non-compliant is bandied around a lot.  I think of that in terms of myself.  According to the medical establishment, I would be considered a non-compliant diabetic, because I do not do what they think I should do.  Maybe I am non-adherent, but as I said - my diabetes and I have an agreement.. and so far it has gotten me 38 years in, which according to the textbooks, shouldn't have happened.  "Non-compliance" implies a combative resistance without negoiation.  "Non-adherence" is a little softer, and more true to a possible decision to decline, or inability to keep up,  Not to say that there are some who are non-compliant, but to use it as a blanket statement for anyone who declines something is harsh, and puts a certain impression in your thoughts. Right?   Think about the word "refuse" as opposed to "decline".  If someone said the patient refused, who do you picture?  And if they said "the patient declined"?  Where is the recognition of the individual to not have treatment in "refuse"?  It says "I am the clinician, and I am put out by the fact that you won't do as what I tell you to do!" <insert stamping foot here>

The "battle with illness" is another bug bear.  I have touched on this here.  Why does it have to be a fight?  Even cancer is not some alien invasion, is a rapid proliferation of your own cells for which the reproductive mechanism has failed.  Yes,  they are cancer cells.. but they are not some evil fucker out to get you, it is part of your body that fucked up.  Same with Type 1 diabetes.. I choose to think of it as my immune system is SO militant, it attacked bits of its home.  Don't say you haven;t seen THAT in the real world.. ;-)  Sometimes, there is a battle.  Whilst I am not an anti-medical establishment, I think it might benefit from a non-paternalistic overhaul.  I trust my doctor's to know about diagnosis, treatment and evidence, but I know about me.  The best therapeutic relationships I have are with those of my doctor's who discuss my issues with me, as a stakeholder, if you like.  YOU are a stakeholder in your medical care.   Good clinicians work with you, not in spite of you.

On that note, I will bow out to continue on my plans for world domination and enlightening those who believe they have no power, into realising that they ARE the power, and it is possible to use the system to go forward - you just have to think outside the box.  ;-)