The Danger of Being Labeled Noncompliant

You hear quite a bit about noncompliant behavior on the news in regards to the demonstrations going on in the country right now. But I'm talking about being noncompliant in your health care decisions. Especially when it comes living post stroke. Maybe, you were one of the lucky ones who recovered 100% or very close to all of your sensation and/or function after your stroke, this isn't directed towards you, but at the other 85% who weren't as blessed like me.

It's been 8 years since my first stroke left me paralyzed on my right side. Now, whatever I did recover has been nullified by post stroke spasticity and contractures.. That's despite being compliant and doing my rehab exercises religiously twice a day to the best of my abilities. My body just worked against me.

What do I mean by noncompliant?

noncompliance

[ non-kuh m-plahy-uh ns ]

noun

failure or refusal to comply, as with a law, regulation, or term of a contract.

(www.dictionary.com)

When I was discharged from the TCU (technical care unit) after my stroke, I was given written exercises to do at home once or twice daily. This was an implied contract. I did and still do them to the best of my ability. I was told why I needed to do them towards my recovering from the limitations of my stroke. I could stop them when recovery was made. Have I recovered yet? No, so I still do them even after eight years.

Now being human, we expect a reward for doing something good, right? We expect

to keep strengthening muscle and memory until the movement is there again. So you don't recover what was lost in the optimum 30 days or even the golden 60 days, you switch gears to the long run. You are no longer running a short sprint race, but a much long distance run. A 10K or 20K? Nobody knows for sure. But you keep at it because one day something may click just right in your brain and function will be restored.  It's a lottery, a chance, a hope, or a dream goal to strive for. And, you are still compliant with the first contract upon discharge 8 years ago.

What's the sense in keeping on doing it, if I can't recover what is lost? Only you can decide when all hope of recovery is lost. If you join the noncompliant group you may still recover, but then you'll be at a loss because muscle mass has been depleted. There are cases of recovery twenty years after a stroke.

What happens when you give up and refuse to be compliant? The physical therapist makes a note in your chart that you are noncompliant. How important is this little note? It will follow you the rest of your days. 

Don't believe me? Think back to your high school 

grades. If you knew then that the "D" you got in history would show up every time someone asked for a transcript, even in your 50s and played a part whether you got a job or promotion, you would have tried harder, wouldn't you try to get at least a "C"?  Sounds silly? It happened to me. It didn't matter a hill of beans that there was issues with the instructor. In trying to explain why, only emphasized my inability to work with others.

Anytime in the future when you need services, it will pop up. Your insurance company also receives a copy of this note and decides not to pay for future treatments. Every doctor that gets a copy of your rehab notes will see it and decide you shouldn't be their patient. Having that little "noncompliant" note can have a huge impact.

Think that a label can't hurt? One doctor dropped my husband from his services and worse yet, labeled him as a drug seeker. Now, my husband's current doctors looked at the label and laughed, and knew it wasn't true. But when looking for another doctor to replace him was next to near impossible.  The label hurt our search. I ended up calling in a favor to get him seen by a new specialist. After listening to his side of the story, this doctor kept him as a patient. We battled this label with every new doctor for ten years before my husband died. A note of "noncompliance" may not be as extreme as this case, but they follow you for decades.

Just a word of warning. Try your best and keep trying. You never know who is watching. You may be tired of trying, angry at a broken system, or involved with current situations that cause you to reach the point of giving up. I understand. I'm there too. But I won't always be here. Things tomorrow may change.

Nothing is impossible.

Just a word of warning.