Non-compliant, Empowered Patient, or just plain tired.

I'm sitting on my bed looking at an unfilled medication script lying on the sheets in front of me. I've had it for a few weeks now, but am yet to take it to the pharmacy. I've tried it before with little success, but personality-bereft specialist number 28 has told me to try it again. It was written up before I had even been given a chance to agree or disagree. He had decided I should try it and that was it.

When I said it was like taking Tic Tacs last time, his response was:

It probably wasn't a high enough dose.

When I asked if he really thought it would work in my case:

It helps some people.

Are there side-effects?

It can drop your blood pressure.

When I was still not keen.

Keep going up in dose until you either have too many side-effects or it works.

When I told him I never have sedative effects from medications (a long-standing, well-documented issue), including this one:

It'll help you sleep.

And so I left, unheard, ignored, with yet another script in my hand.

And I sit here today with the same script sitting unfilled before me. Knowing that I have to see him again next month to update him on my progress. Knowing that the more I look at the script the more unlikely I am to fill it. When you know a doctor hasn't listened, it is very hard to trust their treatment decision.

So much of treating this disorder is trial and error. It is the case of Medication A helps some people. We don't know why. Or how to predict who it'll work for. Or who it will give horrendous side-effects. But you must try it. And so you do. You think doctor knows best. They treat this so they must be making a reasoned decision on what they prescribe. And then you find that you can't control your leg muscles, or that you are in so much pain from excessive vasoconstriction that you feel like you're having a stroke or heart attack, or that you have uncontrolled vomiting and diarrhoea, or that your blood pressure bottoms out, or that your mood is altered, or..... Without knowing a cause, symptom management can lead to many unpredictable and unpleasant reactions.

I've spoken before about the fact that it is patients who bare the greatest burden of any treatment decision. All treatment decisions come with a risk/benefit analysis. All treatment options have risks attached to them. One look at the information sheet that comes with any medication and you are given a list of the generic side-effects, gastrointestinal disturbance, nausea etc, then there are a list of less common and more serious side-effects. As a patient you have to weigh that up against a potential gain, usually symptom control, that may be achieved. For example, I have nausea and vomiting regularly. The only anti-nausea medication that now works for me, contributes to constipation, which I already experience. Which means I have to now take another medication to counteract the increased constipation. But if I didn't take the anti-nausea I'd never eat and could hardly function. And so the cycle goes.

As a patient you have to weigh up potential gain against potential risk.

And that equation will be different for each patient.

For each of us that will be different. My acceptable risk will be different to another patient's acceptable risk. Another example, for me the benefits of taking Florinef outweigh the gastrointestinal distress, or the long term potential side-effects such as osteoporosis or glaucoma. Others are not willing to take that risk. We, as individual patients, must make the decision that best serves our individual presentation, our beliefs, our desire to use or not use traditional medical treatments, what we can afford, what we can access, what level of potential gain offsets potential risk, what other conditions we have, and what emotional investment we are willing to put into the hope-try-disappointment/success cycle.

After 8 years I am tired of maybe. Maybe this treatment will work. Maybe it'll not give you horrendous side-effects. Maybe it will be easy to come off. Maybe it wont contribute to the difficulties inherent to polypharmacy.

It is me who has to pay the greatest burden for any treatment. 

I am happy to try a medication that has a higher level of success based on my individual presentation. A reasoned decision. Not a maybe decision. I am not early in my diagnostic journey. I have done the hard yards. I have tried many different treatments. Even ones I was not keen to try. The last of which dropped my blood pressure and altered my mood to such an extent that it was apparent to all around me. I am not keen to go down the maybe track again.

My experience as a long-term patient is valid. I know my body. I know how it reacts. I come from a background in health and research. I know how to weigh up the data. I also appreciate and value the expertise of my doctors, it's why I go to them in the first place. But more importantly,

I am the expert in me. 

I already take 15 tablets each day, not including breakthrough meds for things such as pain and nausea. Adding yet another two or three to the mix (not including the more recent, and completely impractical, recommendation of taking an expensive anti-nausea medication and 2-3 enzyme tablets before each of six small meals a day), is not high on my agenda. Especially not without a fairly high potential return. I am aware that nothing is 100%, medicine doesn't work that way. There are too many variables in the human body. But I am also not happy with the carte blanche attitude towards script writing by some of the medical professionals I have encountered over the years. And a tendency to ignore or underplay the potential downside to a medication.

Each time it doesn't work, or there are side-effects, my already beleaguered body does not bounce back. It does not simply get over it. It takes weeks or sometimes months. Each moment of stability is hard fought and I am not willing to surrender it to a less than convincing maybe.

I am all for a reasoned, research-based decision that is arrived at 

after a collaborative discussion between myself and a specialist. 

Not one which is forced upon me 

with a dash of hope, 

a very large maybe, 
or a paternalistic "because I say so".

It is costly, physically, financially, and emotionally. It is also costly in terms of time. Each trial equals time. Sometimes time lost, sometimes time well spent. But mostly time handed over for a hope and a prayer. If I am to invest 3mths or more in a medication trial, when I live with a progressive illness, I want to know that the odds are in my favour. Each month with no, or negative return, equals another month of illness, of pain, of nausea, of life not lived. Or potentially, a worsening of health. That is a big ask, and one frequently unacknowledged.

I am a motivated patient. I want to maximise my health and in turn decrease my disability.

I am not non-compliant.

I am empowered.

But I am also tired of managing an increasing level of disability and illness, and having to deal with a medical system which seems tailored to a generic norm, and reluctant to listen to the very patients who must live with the decisions made.

Michelle

Non-Compliant examines decision making processes in depth.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.