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Be a Good Mental Health (or Bipolar) Patient - Participate and Choose to Get Better

June 30, 2011 Natasha Tracy

Last night I participated in the first tweetup for the Society of Participatory Medicine. In their words,

Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care.

Not surprisingly, this is something with which I firmly agree. I believe in patients as active participants in their own healthcare. I say it all the time - the doctors aren't the ones taking the pills, you are.

The issue with pushing for patient "participation" is not everyone is capable of wholly participating in their own healthcare. Sick people are busy being sick. They don't have time to read research papers.

While some in the tweetup agreed, two notable exceptions occurred:

  1. ""too sick"? -why Patient support groups are key took 4 building the 'plumbing'."
  2. "One can't be busy getting well & busy being sick at the same time. The patient has to choose."

Sounds like blaming the patient to me.

Participatory Medicine

To be clear, participatory medicine means different things to different people. I think it means empowering patients and creating a positive working relationship between doctor and patient. I think it means the patient taking an active role in their own treatment decisions.

The flipside is it's also a responsibility on the part of the patient to do the work required to create this relationship with their doctor. It's the responsibility of the patient to learn about their illness and treatment so they can make good decisions. (Doctors, obviously, have responsibilities in this too, but for another day.)

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And that's all perfectly fine. Except when it isn't.

I Need Help Not a Homework Assignment

To be clear, patient education is critical. In mental illness we know this to be true and there are even study numbers to prove it. But just because you learn about your mental illness, it doesn't make you a doctor. It doesn't make you qualified to pick a treatment. It doesn't make you qualified to assess side effects and make treatment changes on your own. You're not a freaking doctor.

And many people are too sick or are too early in the process to understand their illness and the available treatments. If you're too sick to shower it's highly unlikely you have the energy to research your illness/treatment. And patients may not have the education or cognitive abilities to understand the research they would require to make good decisions. It's not pretty, but it's life.

The last thing any sick person needs is the stress of feeling like they're supposed to tell the doctor how to treat them. That stress further sucks what little energy a sick person has.

Comment One - Patient Support Groups Are the Answer

""too sick"? -why Patient support groups are key took 4 building the 'plumbing'."

I call bull-pucky on this. Patient support groups have their place; they certainly work for some people. But when you're dealing with a mental illness everyone is so different treatment correlations just can't be made. Just because drug X works for 2 members of your support group doesn't mean it's right for you.

Patient support groups often help people feel less alone, which may make them feel more empowered, which is good, but patient support groups are a tiny piece of education and "plumbing." And I, personally, am highly wary of bad, inaccurate, if well-intentioned, information being passed between patients when there's no medical oversight. Support is good. Playing doctor isn't.

Comment Two - Choosing to Get Well

"One can't be busy getting well & busy being sick at the same time. The patient has to choose."

That is Oprah-the-Secret-Affirmations-New-Age nonsense if ever I saw it.

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People with a mental illness may be doing the best they can to get well and still be sick most of their lives. There's nothing wrong with these people. This statement is blaming the patient. If you were choosing to get well you wouldn't be busy being sick. Nonsense. People do the best they can to take the steps they are able, on any given day, to get better. And sometimes every waking moment is simply filled with a sickness that has no bottom or end. This is not the patient's fault.

Choose Your Own Adventure

It's OK to choose what you feel comfortable with. I talk about empowerment and learning, and I talk about studies and numbers and data. But you know what? I don't expect everyone to know/remember/do those things. I'm an odd duck. I know that.

There is no yardstick that measures "good patient-ness."

Moreover, in the treatment of mental illness, there is an astounding amount of uncertainty. If I told you my med cocktail, I could tell you that it's working well for me but no doctor would be able to pinpoint why and I'd never recommend it to someone. Welcome to the world of mental illness treatment.

Sometimes you have to trust your doctor has your best interest at heart. I know it's fashionable today to be suspicious of doctors and assume you need to question everything they do, but believe it or not, the vast majority of them are trying to make you better. And sometimes, you have to take their word for it. And that's OK. Sometimes that's the best decision. Sometimes that's the best you can do.

Patient participation should never be about putting more weight on the shoulders of an already burdened individual. The best we can do is good enough.

Note: Those are just two comments out of the many. The Society of Participatory Medicine has a lot of great things to offer. Check them out.

You can find Natasha Tracy on Facebook or GooglePlus or @Natasha_Tracy on Twitter.

APA Reference
Tracy, N. (2011, June 30). Be a Good Mental Health (or Bipolar) Patient - Participate and Choose to Get Better, HealthyPlace. Retrieved on 2021, May 17 from https://www.healthyplace.com/blogs/breakingbipolar/2011/07/be-a-good-patient-choose-to-be-get-better



Author: Natasha Tracy

Natasha Tracy is a renowned speaker, award-winning advocate and author of Lost Marbles: Insights into My Life with Depression & Bipolar.

Find Natasha Tracy on her blog, Bipolar BurbleTwitter, InstagramFacebook and YouTube.

Natasha Tracy
July, 8 2011 at 8:06 am

Hi Smaro,
I believe you're talking about the cytochrome P450 (CYP450) tests which I know are offered at the Mayo Clinic. (Also used in cancer treatment.)
Unfortunately, it really can't pinpoint an antidepressant just sort of point you in a direction. If you had the money and could get the test as soon as you were diagnosed, it might be helpful, but really, it doesn't help us that much as antidepressants are still mostly trial and error. (And I don't know what the accuracy rate is on the test.)
http://www.mayoclinic.com/health/cyp450-test/MY00135
- Natasha

smaro
July, 8 2011 at 3:24 am

Pharmacogenomics could help in choosing the medication that works best for each individual- I don't know if it is already an option in your country, in my soon-to-be-thirld-world-country it isn't, but I am looking forward to it...
You know, testing your DNA for gene alleles that show if you respond well to a drug, or if you metabolize it fast (so a larger dose is required to rach therapeutic doses) or too slow (so the dose has to be minimised to avoid side effects...)
Sounds great! Tell me if you had the chance to find it...

Natasha Tracy
June, 30 2011 at 5:07 pm

Hi Joel,
I appreciate that is your experience but I see personal, medical recommendations every day online. They're everywhere.
And if 99 people say the med is bad, but 1 says it's good, what benefit is that? Should the patient not try it? Should the patient assume the med won't work or will have too many side effects? The 99:1 ration essentially means nothing because we're all different. Not to mention the fact that many people are on cocktails and this means even less similarity.
I think patient communication and support is good and beneficial for many people. But when it comes to medication specifics, the line is very fine.
- Natasha

Joel
June, 30 2011 at 2:38 pm

I run a patient support group. I have never seen the function of them to tell people what treatment they should demand of their psychiatrist (other than to recommend that people see both a psychiatrist and a therapist). When someone asks me what med they should be on, I talk about my horrible experience with Abilify and then ask "Who here has had good results with Abilify?" Several hands go up. "The moral of the story is to try whatever your psychiatrist wants you to try and see how it works for you. I don't say 'Avoid Abilify'. I can't say that it won't do good things for you. You have to find that out for yourself." Compliance among the regular members is nearly 100%. I think that is a positive.

Natasha Tracy
June, 30 2011 at 10:40 am

Hi Marcela,
Glad to see you pop by with your viewpoint.
1. Agree. I tend to focus on the patient as I don't have other advocates, personally, but in many cases family and friends are advocates and very important ones at that. Good topic of discussion, I think.
2. Yes and no. There are sites I really like in terms of giving patients the right kind and amount of information (the resources page on my site lists a bunch) but it's so hard to ensure what a patient is getting is _accurate__quality_unbiased_ information. It's a challenge.
(On that note, in the waiting room in the mental health center here there is a video they play from, I think the Mayo Clinic, that walks people through various concepts like sleep routine, diet, relaxation exercises. It's really good and, obviously, high quality.)
3. True.
4. Also true, I write about that a lot. The key is in making sure the doctor knows what you know about yourself - what the side effects are and their severity, so they understand not only their existence but their impact.
Sure, I'd be happy to co-host a chat. Just message me on Facebook.
Thanks,
- Natasha

Marcela
June, 30 2011 at 10:06 am

Glad you expressed this viewpoint at the chat last night! I also like your comment about "There is no yardstick that measures “good patient-ness.”
My comments would be:
1-Part of what S4PM is about is drawing patients into the conversation at all since historically their input may have been ignored with tradition of paternalism in medicine, so may seem like expectations set are going to other extreme. I definitely agree that when you're sick may not have energy and may be more "high functioning" people that end up speaking up. I'm also planning on doing a chat on family involvement since spouse or parent may be the one making decisions in some cases.
2-Part of this is (or should be) also about creating more resources to get involved at the level where they are comfortable. I don't think it's realistic to get most patients to read research papers (which even doctors are reluctant to do at times!) but getting resources that explain concepts at lay person level or creating decision making aids to make things more accessible to people with lower health literacy levels at least makes more options available.
3-Trust is so so important as you point out! Respect should hopefully be mutual. Harder when you don't have that steady relationship with a doctor
4-In terms of assessing side effects, it is important not to minimize the importance of bringing it to the attention of the doctor since they're not going to be able to guess at what's going on and are dependent in part on your self-report unless its something overt like a rash on your face or something that shows up in your blood tests. Also they might not be aware of issues like diabetes running in your family if that didn't come up in your history.
Anyway, this would be a great conversation to continue if you want to cohost a chat or if people just want to post tweets with #s4pm

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