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Notes from Philly Trans Wellness Conference: Strategy Words for Medical Self Advocacy

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Here’s the info I promised folks who attended my Medical Vocabulary for Medical Self Advocacy workshop.

You can also download a PDF  HERE

By Kelli Dunham RN, Stand Up Comic, Annoying Uncle Who Wants You To Be Okay (kellidunham.com)

-Health care providers have tons of unearned power (you use your first name, they use their last name, they are clothed, you might be some variety of unclothed or weirdly clothed, etc)

-The world of healthcare is its own specific culture and language. Being able to move through that culture and speak that language can sometimes help you get what you want and need from providers.

-Providers can be beautiful people (I know many awesome providers and I’d like to think I am somewhat awesome myself) but we are also flawed humans and have soft spots and egos and areas of personal limitation.

-The system is inherently flawed, built as it is on capitalism and often provider convenience.

-You are never responsible for bad health care and you should not be in a place where you have to so strenuously strategize for your basic human dignity.

-However, since we had to receive health care FROM THE SYSTEM WE HAVE NOT THE SYSTEM WE WANT, it can be helpful to have some tools at our fingertips to use.

“I THINK WE ARE HAVE HAVING A MISUNDERSTANDING”

This is a useful phrase when you need to correct a provider but still wish to allow them to save face and/or you don’t wish to challenge their ego which of course can have its own consequences.

“I THINK IT WILL WORK BETTER FOR BOTH OF US//I KNOW WE’RE IN A TIME CRUNCH”

If you need the provider to change their approach, use different words for your bits etc, it can help to acknowledge the fact that almost all healthcare is provided by folks who are constantly being harassed to provide it faster. Primary care providers often only have 12 minutes to address the specific problem you’ve walked in with (and who walks in with one problem). Referencing the time pressure and acknowledging the provider also has needs/wants in the interaction can help it feel like patient and provider are on the same side.

“MY GOAL IS/ MY PRIORITY IS…”

When you walk into a provider’s office, they may see this as an opportunity to address your overall health. Sometimes that’s about being a bossypants body colonizer and sometimes it comes from a place of “Oh shit this person never comes here. Let me help them with EVERYTHING.” Either way, it means you are in the position of trying to deflect questions to get what you came for. Sometimes what you came for is really impacted by something the provider wants to address, in which case it makes sense to listen. But if they’re clearly off on a tangent and because of your trauma history (or hell just being a vulnerable human) you’re about to blow something, redirect them with the words “Yes, I understand but my priority is X.”  You might need to repeat it a few times.

“I WAS READING SOME STUDIES /THE MOST RECENT LITERATURE…”

This is a tricky one because you want the provider to think you’re an informed patient, not a know it all.  (cough egos- cough) Most modern health care providers embrace or at least expect their patients to have consulted Dr Google before they come in, but make it clear you’ve done your research looking at reputable/peer-reviewed sources. Hint: Anything that involves Gwyneth Paltrow is not a reputable source.

“I FEEL LIKE YOU MIGHT BE JUST SEEING ‘NONCOMPLIANT PATIENT’ BUT LET ME EXPLAIN MY THOUGHT PROCESS/SITUATION”

If you haven’t been doing something a health care provider told you to do, there’s probably good reason for this. Explain to the provider what the reason/life situation is for the choice so that they can make a different, better or more nuanced recommendation that will work for you.

ABOUT THE PAIN SCALE

The 1-10 pain scale isn’t perfect but it’s what we’re using right now. One of the drawbacks is that everyone literally has their own reference point (“the worst pain you can imagine”) and this makes it not always useful for diagnostic purposes. So provide a number, and do make it between 1 and 10. Otherwise providers roll their eyes up into their heads. But also add a functional comment. For example, “The pain is a 7, I can still talk but it makes it hard to even stand up when it’s at its worse”

I REFUSE

I REFUSE: This is the SAFE WORD of healthcare, essentially a sledgehammer of a word that means FULL STOP.  Be specific about what you’re saying full stop to. If you say I REFUSE CARE that will get out that particular situation but will also mean the healthcare interaction will come to an end.

You can use a variation like “I refuse this procedure” or some of the other words/phrases above to slow down the situation.

Notes from SEIU Nursing Conference

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Hi amazing nurses I met at the SEIU conference! Thanks for the great discussions! Here are some of the resources I referenced during my presentation, we didn’t really get to the scenarios because everyone already brought up their own scenarios (which was perfect) so I’ve included them here as well. Don’t forget if you need help, reach out to me! I am available my email (kellidunham@gmail.com) or text (215.964.1963). You can also call, but sometimes I’m a little slower with that.

A resource I meant to mention during the workshops but didn’t: A brand new book by Kimberly D Acquaviva, LGBTQ Inclusive Hospice & Palliative Care, is a great resource not just for the information about hospice/palliative specific care but for the broad overview it provides about historical barriers to care and ways to encourage colleagues to provide competent care.

RESOURCES FROM SCENARIOS

SCENARIO#1:  NOT REACHING LGBT PATIENTS WITH SMOKING CESSATION PROGRAMS

Name: Fenway’s Health Education Center Reducing Tobacco Use in LGBT Communities How Providers Can Help
Site: http://www.lgbthealtheducation.org/wp-content/uploads/Reducing-Tobacco-Use-in-LGBT-Communities-Final1.pdf

How to Run a Culturally Competent LGBT Smoking Cessation Group
Site: http://lgbttobacco.org/files/Bible.pdf
Note: Targeted for folks creating programs from scratch in their communities.

Name: CDC Smoking Cessation Tips From Former Smokers
Site: http://www.cdc.gov/tobacco/campaign/tips/groups/lgbt.html
Note: This contains links to video tips from former smokers who are members of the LGBT community.

Name: LGBT Healthlink: Order LGBT Culturally Competent Smoking Cessation Materials
Site: http://www.lgbthealthlink.org/order-materials
Note: Includes infographics, posters etc targeting the LGBT community.

SCENARIO #2: ALL GENDER BATHROOM “PEOPLE SHOULD STAY AS GOD MADE THEM” RESPONSE

Name: LGBT Task Force Links to Resources for ALL Communities of Faith
Site: http://www.welcomingresources.org/multifaithlinks.htm

Name: HRC’s Faith Position Page
Site: http://www.hrc.org/resources/faith-positions
Note: This site contains links to the official positions of many major world religions in regards to LGBT people and issues.

Name: I’ll Go With You
Site: http://www.illgowithyou.org/
Note: A campaign that encourages allies to be available to accompany trans folks to the bathroom or other places they may face discrimination or violence. Lots of excellent information that points to the importance of all gender bathrooms.

SCENARIO #3: REACTION TO OLDER LGBT COUPLE DISPLAYING AFFECTION

NameL The National Resource Center on LGBT Aging
Site: https://www.lgbtagingcenter.org
Note: This can be your first stop for all things regarding providing care and resources for LGBT older adults.

When Health Care Isn’t Caring: Older Adults Living with HIV
Site:https://www.lambdalegal.org/sites/default/files/publications/downloads/whcic-insert_lgbt-older-adults-and-older-adults-living-with-hiv.pdf

No Golden Years At the End of the Rainbow: How a Lifetime of Discrimination Compounds Economic and Health Disparities for LGBT Older Adults
Site: http://www.thetaskforce.org/static_html/downloads/reports/reports/no_golden_years.pdf

Nurses’ Health Education About LGBT Elders
Site: http://www.nursesheale.org/
Note: This is a curriculum (available for purchase and developed by the Howard Brown Health Center) to help fill the knowledge gap for nurses about the health needs for LGBT older adults.

OTHER SITES, RESEARCH REFERENCED IN PRESENTATION

Name: Joint Commission’s Guide to Culturally Competent Care of LGBT Persons
Site: https://www.jointcommission.org/assets/1/18/LGBTFieldGuide_WEB_LINKED_VER.pdf
Note: Contains lots of great info about coding sexual orientation and gender identity in electronic health records.

Name: Fenway’s LGBT Health Education Center
Site: http://www.lgbthealtheducation.org/lgbt-education/learning-modules/
Note: Contains powerpoint presentations on many different aspects of LGBT health including information about Pep and Prep, Achieving Health Equity for LGBT People, caring for LGBT young people, older adults etc. They also have webinars that are FREE and offer CMEs and CEUs!

Name:Fenway’s LGBT Health Education Patient Brochure Explaining SOGI Questions
Site: http://www.lgbthealtheducation.org/wp-content/uploads/2016/08/SOGI-Patient-Handout.pdf
Note: This is printable patient brochure that answers the question: “why are you asking me about sexual orientation and gender identity?”

OTHER RESOURCES OF INTEREST

Need access to  rigorous, independent research on sexual orientation and gender identity law and public policy?
Name: The Williams Institute
Site: http://williamsinstitute.law.ucla.edu

Need a resource to teach students about the history of HIV AIDS especially in the LGBT community?
Name: United in Anger: An Oral History of ACT UP
Site: http://www.unitedinanger.com/

Need info targeted for primary care providers learning about hormone replacement therapy for trans folks?
Name: Lyon Martin’s Hormone Therapy Cheat Sheet
Site: https://transline.zendesk.com/hc/en-us/articles/229373288-Hormone-Therapy-Cheat-Sheet

If you need more comprehensive information about trans health check out:
Name: UCSF Center for Excellence in Transgender Health
Site: http://www.transhealth.ucsf.edu/trans?page=guidelines-home

Need a book that includes stories and essays about LGBT health written both by lay people and by providers AND that includes diverse voices and an intersectional lense?
Name: The Remedy: Queer and Trans Voices on Health and Healthcare edited by Zena Sharman
Site: http://www.writetheremedy.com/
Note: I have an essay in this book and recommend it highly but have no economic interest in promoting it.


KELLI’S WRITING / RESOURCES ABOUT LGBT HEALTH

If you’d like me to come to your event, college, health system etc all my booking information can be found on my website:
https://www.kellidunham.com/booking/about-health/

Please email me (kellidunham@gmail.com) or phone/text me (really! You can: 215.964.1963)) if you need any resources, information etc. I might not have every answer, but I’m glad to help search for what you might need or connect you as I am able.