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Pain in an opioid epidemic...

Brenda Lloyd | 2020-02-03

Not long ago, I read an Instagram post - from a fellow hemorrhagic stroke survivor - that briefly mentioned how her needs were dismissed, and her diagnosis delayed, because ER staff suspected her of drug seeking.

A personal trigger of mine, to be sure.  

Every time I hear a story of a stroke victim being sent home undiagnosed in this day and age - and I'm still hearing far too many - it irks.  When that delay is the result of assumptions, stereotyping, and judgements - I trip a little. It astonishes me that, almost twenty years beyond when I was treated with such suspicion, it's still happening.

I acknowledge that it's a tricky spot to be in, requiring serious pain control in the midst of an opioid epidemic...and it's exponentially more tricky if you have an invisible medical issue.

 When my AVM first manifested itself in small bleeds, I was in the Canadian Armed Forces.  I totally cop to the fact that I was, indeed, seeking drugs...really, really good drugs, in fact...because I was IN AGONY.  

Anyone who has had a brain bleed will likely tell you that it's "the worst pain" they've ever had.  I've birthed two children...naturally, no drugs, with a midwife in attendance, and I coped with both labours well...and yet, I still begged for relief whenever my brain bled. 

To be honest, I don't completely remember that time in my life.  It's all vague and murky, half-baked memories.  I only got a clear picture of my care at that stage of my AVM journey, and learned about what I had been fighting against, when I was medically released from the CF and requested a copy of my complete medical file.

Going through it, way back then, I very quickly found the one wee entry that I feel (as did my lawyer) caused the vast majority of the problems that dogged me, and delayed my true diagnosis, for years.  In it, the attending physician stated that , "Apparently, pt. remarked to screening MedA (medical assistant) that she normally requires 'mega doses' of narcotics" for this. The record then went on to show that the doctor phoned my home unit, only to be was told that I had seen many different doctors for the issue.  

So, a few medicals talked, discussed the possibility of me not only being a drug seeker but a doctor shopper, as well, and, it seems, my file was flagged.

As I said, I don't remember those days well.  I've never been one to say "mega" anything, but, as I was having a bleed, I could have, I guess...I would have downed mega-anything in that moment...just to make the pain stop.

Instead, I was diagnosed with muscle strain in my neck (my bleeds have all been subarachnoid), given Motrin (anti-coagulant properties and all), told to rest and use a cervical pillow.

No scan...

That particular incident took place in 1995.  I wasn't diagnosed - and experienced numerous other bleeds - until 2001.  That is how long that judgment/suspicion - that one wee medical entry - tainted and affected my medical care.

It's been decades since that all went down, but I still have a tendency to get anxious and defensive with health care professionals when it comes to my issues and pain management.  One counsellor told me that said anxiety is a result of medical PTSD (I apparently have trust issues due to my past pain and medical care). shit...although I told her that she was not to put anything about PTSD in my file...that I had no use for more labels or flags or issues that others would want to medicate me for, thank you.  

I don't have PTSD. 

What I do have is a brain that is more than a little broken (I often wonder how many trillions of brain cells I lost as those who treated me judged and whispered). 

What I have is a rather keen awareness that doctors - medical professionals - are all too human; they can be fallible...and judgmental.

What I have is the experience to know that far too many people are considered suspect - "guilty until proven innocent" - in the current medical system; and far to many people who truly require pain relief are left in agony because far too many others play the system to feed addictions. 

And...what I also have is the hard-won knowledge that the words doctors write down in MY medical history have power...the power to heal, yes, but also the power to influence the care that others will provide me in future, the power to ruin me financially (insurance companies will read their words before they listen to mine), and yes, the power to kill me.

I am lucky to have survived all of those medical professionals that I initially went to for saving. 

Still, I try hard to not let my past care (or lack thereof) influence how I treat or judge the new doctors I see these days. To do so, I know, would make me no better than the medical professionals I've just written about; those who judged ME based on the actions of others.

And I am aware that, in the end, it was other doctors who saved me, and continue to keep me alive today.

And so, it has all balanced things so often do. But, I remain understandably wary...and now, if I feel I am being dismissed or patronized by a doctor, I will ask that the encounter/my request/my concerns be documented, and I will then ask for a copy of the report.

It may seem a bit harsh, I guess, but it's how I've learned - the ever-so-hard way - to advocate and protect myself in the midst of this seemingly never-ending opioid epidemic.