Starting something new...
On appointments, the first resource from my new series! Including a checklist, useful terms, tips n tricks + more...
I first wrote this out last week, and it went on and on, like the pages from my journal when I was fourteen.
I tried to explain what it means to sit in the space between oversharing, TMI and vulnerability - to tell my Endometriosis journey online. I tried to describe how confusing it is. Clearly, that version didn’t make the final edit. I’m gonna let it stew a bit longer and see if I can make it any clearer. In the meantime…
I started a series, and last week, I released the first of the infographics, ‘Appointments.’ You can go to my Instagram feed and have a geez below if you like. I wanted to provide a written long-form version of the infographics. So here it is!
I give you my story so yours may not have to be so painful. A checklist for appointments, useful terms, tips and tricks + more.
I’ve been living with endometriosis for over ten years. I’m also the chair of Insight Endometriosis, a community-based charitable trust. I am not a doctor, so please seek advice from healthcare professionals. This lil post is part of my series of infographics (lol) to share what works for me and how I am ‘surviving endo’.
The Basics
Whether you suspect endometriosis or already have your diagnosis, you’ve likely come into contact with those mystical and inscrutable beings known as healthcare professionals…
If you’re not a cis man and not White, you’re probably correct to assume, as a general rule, that the healthcare system will not take you seriously. If you’re a White cis woman, maybe they’ll listen on the fifth try.
But if you’re a trans queer immigrant or an indigenous person? They might start to listen on the fiftieth try or maybe the hundredth...
Please note, I know it’s not all doctors but the research shows that it is enough of them.1
A Checklist
I’ve had many, many years of practice. These are the things I find useful to bring along to appointments -
Charged phone/device
Medical, History Documents,
List of current medications,
List of questions,
Pain/anti-nausea/anxiety meds (appointments can be stressful!!)
Your mobility aids
Tens machine
Heat patches, hot water bottle, etc.
N.b. A packing checklist is coming soon!
In my opinion:
When I present as ‘put-together’ but not doing great (struggling to cope), doctors do pay me a bit more respect.
I know, I know, it’s absolutely fucked, but as we already know, docs are biased. I try to play the system to my benefit.2
FYI: You are allowed to ask for a differential diagnosis (DDx)
So, what is a DDx?
When your symptoms match more than one condition, and further tests are necessary before the doctor can diagnose, you can ask for a differential diagnosis. The doctor should then be able to give you alternate diagnoses. If they decline to do so, you can ask them to put that (and the reason why) on your healthcare records.
I’ve found that actually works well for other issues. E.g. the doc is telling you xyz is your only option? Ask them to put it in writing.
N.B. Use this technique with caution, as it may upset the power imbalance.
My tips and tricks:
Familiarise yourself with the common myths.
There are many resources by many people, but take time to let that info sink in or keep really good notes to refer back to.
Bring the most ‘privileged’ support person you can.
I’ve found that my doctors are way more likely to listen to White loved ones...
Have a clear list of demands, lol.
Know what you’re after ahead of time. If you can present it as the path of least resistance, they may be more likely to listen and kick things off.
Prioritise learning how to advocate for yourself. This will take time, so be kind to yourself, it’s all a learning experience <3
For more on this topic, check out Insight Endometriosis’s self-advocacy info guide on their website. It is chock-a-block with stellar information, including patient rights and lists of questions you and healthcare professionals might ask each other.
For more in this series, turn on notifications for my Instagram account and click the button below!
Study: Implicit Racial/Ethnic Bias Among Health Care Professionals and Its Influence on Health Care Outcomes: A Systematic Review. Link: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4638275/]
Further reading and Keyword search: Health care + Bias + Women + People of colour + Māori + Immigrants + Black people + LGBTQ/Rainbow + Poverty + ETC.
Anecdotal evidence: TikTok by @AlexFeelsbetter. Link: [https://vt.tiktok.com/ZSLvkwX3h/]