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Medical compliance? Adherence? Screw that. My MDs are my PARTNERS


GiaK
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A post that might help others... here is the original link http://beyondmeds.com/2012/01/30/compliance/

for links that are contained within the post you should go there.

 

Medical compliance? Adherence? Screw that. My MDs are my PARTNERS

 

A friend of mine who has been gravely harmed by the medical establishment, much like I have, asked for some advice via email the other day about how to begin a relationship with a new (alternative) doctor.

 

Because I’ve found that alternative doctors are very much like mainstream doctors when it comes to thinking they know all, I’ve learned how to approach new MDs and other types of doctors so that we understand each other from the get go. I suggested my friend make boundaries right off the bat. This does not guarantee continued respect from the doctor but it greatly increases the chances. If they are not willing to work with this agreement it’s a good idea to move on.

 

My friend told me it was very easy to fall into the “obedient patient” role. I told her that is what she must not do if she hopes to stay safe. We cannot afford to be obedient patients ever again. The sad fact is those of us with severe iatrogenesis caused by psychiatric drug use and withdrawal run the risk of being harmed further by routine medical care. Most doctors regardless of training have not seen this sort of thing, or if they have they’ve not recognized it, and many will balk at the severity of it and frankly want to treat in ways that are frankly dangerous. This has happened to me many times now. Though at this point I know the red flags and that helps minimize the problem.

 

So, I told my friend:

 

that’s the only thing you need to avoid — being the obedient patient! And tell the doctor upon meeting him that you will not become the obedient patient. There is nothing better than clear communication to get our needs met.

 

PERIOD.

 

that’s all…tell him you’ve researched your condition and that you’re in conversation with others who also have it and that doctors of all stripes alternative and otherwise can harm us…because no one really understands our sensitivities…and well, neither do we, which is why we need help.

 

TELL HIM THAT…if he can’t hear it he’s not worth working with.

 

TELL HIM you will be his partner, but not his subject…that you hope that you and he can learn together.

 

TELL HIM you will research anything he suggests and may or may not follow through.

 

TELL HIM that you reserve the right to make choices about how you care for your body.

 

find a way to communicate all of the above and you’ll be okay…whether or not you end up working with him…(oh…and he’ll agree to all of it…but he may not really mean it…it’s very common for MDs to go along with these sorts of boundaries and then get pissed off anyway when you show that you have a mind of your own (see here for example)…still you may get what you need for a while…)

 

good luck!

When someone is seriously ill finding a doctor one can work well with is akin to finding a good and healthy spouse. It’s a serious matter and you and that person must be compatible and have deep mutual respect.

 

Another way to consider this, and this is unlike what one has with a spouse, is that until a relationship develops between you and your doctor and the partnership can begin, the doctor is essentially a paid consultant. He or she is in your employ and you determine whether or not their service is for you. If trust and a relationship develops after that then the partnership can begin.

 

Not long ago Dr. Steve Balt, author of Thought Broadcast, wrote about the topic of medical “adherence” as well. When “Adherence” Is A Dirty Word. It’s worth seeing what a doctor thinks about this topic and the comments after the post are worth reading as well.

 

So I imagine the above notes to my friend might annoy some doctors, but you know what? I have a good team of folks that I work with now. Wonderful professionals who deeply respect me and I them. It works to be explicit about the above needs. And if a doctor doesn’t understand how it’s a good thing that you’re deeply involved in your own care then that doctor is not the one for you. Let them care for the people who want to be the obedient patient. Move on and find one that will hear you and understand that your are the best person to know what some of your particular needs are.

 

go here for embedded links: http://beyondmeds.com/2012/01/30/compliance/

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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Yeah! Thanks, Gia.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Terrific post.

 

I agree it is easy to fall "in line" as a patient, especially before doctors with certain personality types. I've experienced a definite power imbalance with doctors, not even specific to those in our condition or psychiatry. Maybe it's inevitable when there is greater demand for medical services than supply. Because of this I've never noticed a doctor react as if it was a big loss when I stopped seeing him or her. The imbalance gets worse as we veer off my specific history which reinforces their superior position. Not only am I the patient, but I am the 'mental patient'. Even today I am the patient with 'extensive psychiatric history'.

 

With most doctors I've felt looked down upon, dismissed and ignored. I experienced these feelings time and again. Even in instance of sports injury...

 

I also used to think my doctor would protect me. As you argue, and I agree, this is simply not realistic at this point (and in my case, it never was).

 

Currently, the sensitivies I struggle with are not given adequate respect by most health care professionals. In some cases, I've been able to explain my sensitivity to a receptive doctor. In other cases I've had to conceal the sensitivity, and steer the doctor towards interventions I can dilute or am willing to try to tolerate.

 

I have a couple of pre-existing relationships that are half honest. For instance, I have a pro-drug counselor with whom I work on CBT. She is not open to my reality, something I learned rapidly. Also, she occasionally wastes my time babbling nonsense about chemical imbalances. But she is a net-positive in my recovery so long as I keep her in her box. That box is working on CBT.

 

In the end though I can't waste my time working with someone I can't work with. There are many reasons for this, And sometimes, I walk away from a healthcare provider. I used to fear this, that I'd miss out on someone who 'could finally help' but now I have a better set of priorities.

 

I realize I am in charge of my health and I wish I'd done more to assert my responsibility way back then. I have to protect myself or it just aint happening...

 

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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I can't believe how firmly entrenched this word is in the medical and related communities. In looking at the data I pulled off of the company website regarding my cpap treatment, I was considered not to be compliant with treatment since I didn't use my machine for a minimum of a 4 hour block. It assumed this was a deliberate action on my part even though my dream was to go to sleep and not wake up until the morning.

 

Dr. Steven Park, ENT/Sleep Medicine Specialist has a great article on this issue:

 

http://doctorstevenpark.com/sleep-apnea-cpap-compliance-craziness

 

""One of my biggest pet peeves is how doctors use the word compliance. If a patient doesn’t comply, it usually implies it was the patient’s fault. In sleep medicine, compliance is often used to measure how well patients use their CPAP machines. But compliance is not the same thing as success.""

 

Dr Park goes on to say, "There are many patients that are 100% compliant with CPAP, using their machines 100% of the time they are sleeping, with no leaks and a low AHI, and still feel no better. Sometimes they can even feel worse than when they don’t use CPAP.""

 

Anyway, I feel we all have to do what we can even if it is very small scale to get this word out of the medical community. I think alot of professionals have good intentions but they don't stop to think about the impact of a word and how negative it can come across.

 

Great topic.

 

CS

Drug cocktail 1995 - 2010
Started taper of Adderall, Wellbutrin XL, Remeron, and Doxepin in 2006
Finished taper on June 10, 2010

Temazepam on a PRN basis approximately twice a month - 2014 to 2016

Beginning in 2017 - Consumption increased to about two times per week

April 2017 - Increased to taking it full time for insomnia

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  • 2 weeks later...

Ive been thinking about this post a lot. I didn't realize it at first but it hit on a lot of my areas of vulnerability.

 

For a long time I was treated by a lousy shrink. I call him Dr. FG, Alto has referred to him as Bad Dad. Dr. FG has made a lot of errors in treating me and he's known me, been an authority figure for me, since I was a teenager. He is also arrogantly bullying. I've realized he uses his intellect-- his vocab scores on his standardized testing are probably in the perfect neighborhood -- to keep others at bay. Partially, theres some power, Dr-ego thing at work but I don't think it's his primary motivation. IMO, he tries to intimidate others, especially the other doctors who share his building and work in my city, so they keep a distance and don't stick their noses in. This makes it easier for him to, now and then, fall into full blown addictive relapse. (he's been disciplined so many times that he has changed from emergency medicine to psychiatry but, after most recent relapse, still works with a stayed suspension on his license.)

 

Being a former addict, I now understand much better. But for years, when I was heavily drugged, I didn't know how to respond, what to do, if I could believe my eyes, what my rights were, etc.

 

Recently I've had a couple of issues with doctors and realized I am still all screwed around by my experience with doctors. I've been flat out told, by doctors who didn't understand w/d, that I would never be able to live a normal life, with occupational and interpersonal effectiveness. I don't think I am recovered from the damage of the bombardment of this repeated message.

 

However, people who knew me before I got on drugs or have met me after 2010 have never voiced such things, including mental health professionals and neurologists who HAVE expressed how perfectly functional-- less my w/d symptoms -- I appeared to them and how stunned they were to learn I was put on atypicals earlier I my youth.

 

One do tor said I'd been criminally victimized by psychiatry. He was a neurologist. (however, it is also possible, being a neurologist, he simply despises shrinks as pseudo-docs...)

 

Anyway, I've heard of people being abused by priests and dealing with that trauma. I feel that way about doctors. I have nightmares about doctors. And, today, when I feel I've been mistreated and try to assert myself I am still not able to do it naturally and without self-doubt and deference. Or I overreact. I am so very spun out after my ordeal. As much as a sometimes try to think of myself as emotionally collected, I am not yet able to be rational with medical professionals.

 

I guess it will be a process for me.

 

I am currently writing a letter to a shrink who, IMO. mistreated me, incorrectly extrapolated from bits of my history and was generally inhumane towards me. As we sat in his office he looked down at me the way one on a high-rise observation deck observes the pedestrians walking below. This set me off but I'm not fully recovered to react how I hope to.

 

This original posts resonates because I demand to be treated fairly and as a person and I hope to get better at this because, for now and the remainder of it, I am going to need to interact with doctors. It's just easier for me type about it than do it well, for right now at least.

 

Thats all.

 

Alex

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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