Today’s post is a copy/paste from an answer I wrote in my socials. This is real life, not polemic.
“I’m a woman trying to get a diagnosis for my pain. I can’t understand the doctors, or they don’t understand me. Do I need to take someone in with me? I need the dr to take me seriously.”
Hoo boy, is this in my wheelhouse. Longtime (>25 yrs) pain patient, retired RN, ongoing patient advocate & educator.
You’re right: the pain of women (cis & trans) and people of color is dismissed, misunderstood, and under-treated horrifically. Know that this is unconscious reflex. It can’t be corrected by us, but it usually can be hacked.
How?
By presenting it as non-personally as possible. In other words, use:
A. Data & images to describe your pain & its effects,
B. Journalistic documentation for your experience with it, and
C. Others’ voices to support your words as you communicate it.
First, though, two key points:
Pro tip 1: Keep in mind “an averagely bad day”. We cannot plan for anything better.
When we’re describing how our pain affects us, we have to stick, not to our best or worst day (because they’re irrelevant; they’re exceptions) nor to an average day (because that’s out of reach without effective diagnosis, treatment, support, accommodation, nourishment, and rest), but to an averagely bad day.
This is our reality, and it’s what they need to know in order to plan appropriately and understand our needs.
If you describe any worse, you’re assumed to be faking it. The lack of conviction will show.
Any better, you’re actually faking it, but in the other direction.
“Averagely bad day” is the functional standard.
Pro tip 2: Recuperation and recovery is not calculated into pain description, unless you put it there. For instance, an activity that wipes you out for 3 days is different from an activity that knocks you back for a couple of hours, even if the reported level of pain is similar. Eff that tish!!
Calculate & document recuperation time.
For each thing that makes it worse, or each flare, document how long it takes to get back to your baseline. This is key to getting remission or even disease recovery.
A. Pictures & numbers
There are not enough words for pain in the English language. Also, as we know, they’re somehow just noise when coming from a woman, a “weirdo” (fill in any pejorative term), or a person of color. It’s wild, but there it is. We have to work around that.
Most of my tools are about getting their attention off of me and onto the pure information about my condition.
Which is interesting to them.
I’m not, and I handle things accordingly.
There are many ways to document the location, character, and intensity of your pain:
– Take pictures and mark them up in your photo editor.
– Fill out those “standard body” outlines.
– Draw your own outline of body or body parts and use that.
– Whatever works for you — just visualize it.
Make them look at the image, not you. Then they’re processing info, rather than being triggered by “woman reporting pain — must pretend it isn’t happening”.
We were all brought into the world by a way that typically causes a heck of a lot of pain to those giving birth, and sometimes I wonder if that primal event is what the denial relates to.
Functionality is the bottom line for any chronic condition.
The more you can put numbers to your levels of capacity at different times, the better. “Can carry 2 grocery bags 30 ft to the door today after meds, but yesterday I could only carry 1 without meds.” That’s an incredibly boring task, but it’s also an incredibly important indicator of function. It’s pure gold for the doctor’s notes.
I’ve got posts about doctor visit updates and timelines that demonstrate these tools in real life. For more info, go to the search bar or word cloud and search “documentation”. The site is a bit chaotic, but it’s all there.
B. Journalistic notes
Journalism answers “who, what, when, where, how, why”.
Who:
You’re the “who” who’s in pain.
Who sees, or is impacted by the effects of, your pain? Kids, colleagues, etc.
Who gave you a diagnosis, if any? Mention doctors by name and specialty.
What:
What hurts?
What makes it worse?
What makes it better, and is it significant or not?
What have you tried but had no benefit?
What’s affected? (Work, walking/standing, using the bathroom, carrying things like equipment or groceries, sleep, food prep & eating are the usual biggies.)
When:
When & where did it start?
When does it get worse? Better?
Does it have a diurnal pattern, meaning a consistent rise or fall through the day & night?
Where:
– Where, and how, does it hurt? Pictures are your friend. See A.
– Where do you go that makes it worse or better? Parks, forests, or print shops & other VOC sources can have an impact.
How:
– Describe the character of the pain: piercing, squeezing, burning, tingling, nauseating, etc etc.
– How does it limit you? Be specific. It helps to know that a gallon of water weighs 8 pounds, a bag of groceries about 10-12, a can of beans about a pound.
Whether you can lift without symptoms, how far you can carry, and whether you can manage stairs with those loads, are all good data!
How much you can do *safely and without needing recovery* is key.
– How long does it take to get back to your baseline after something happens? Calculate & document recuperation time. More on this later.
Why:
– If you have any thoughts about why it happened, mention them.
– If you have health-related gene scans or DNA analysis, it can strengthen the case for paying attention to you.
DNA rarely provides diagnoses, but clarifies ways you’re susceptible to types of illnesses, including pain diseases.
– If you have found any scientific articles, bring copies or send links.
C. Others’ voices
Others’ voices (especially deep voices from tall men) are more credible, somehow, and that’s messed up. Our lone voices should be heard! We are the experts in our own experience! But, well, here we are.
– If you don’t have a male friend or relation who is willing to be your “stunt man” and sit there exuding man-itude and occasionally repeating what you say, then there are other hacks.
A 3rd person in the room is key.
– A woman is excellent! She can sit there and quietly back you up, which is the baseline. She can ask if you feel like your questions were fully answered. She can ask if you understood what the doc just said, if it sounded like blah blah blah. She can ask her own questions, if you’re both OK with that. It’s your appointment after all; you can bring your own help.
You might (!!) see the doctor jump when she speaks, if they’ve forgotten she’s in the room. (It’s good for them.)
Pro tip: You’re a patient. Pride is irrelevant. It’s OK to seem goofy (though neat & well dressed, if possible), as long as your needs are met and your care is appropriate and effective.
– It’s the law that you’re allowed to have a chaperone (yes, they use that word!) from the office in the appointment with you. Insist sweetly that you know it’s your right to have a chaperone with you, you want one, and you’re here a little early (be 15 min early) to allow them to find one for you.
You don’t owe any further explanation, though you can assure them the dr is fine, you want a chaperone anyway. (They’ll just have to work short-staffed until you’re done.)
Corner case: There’s an outside chance they’ll send in a security guard, which is inappropriate (they don’t have medical training and aren’t as trained in HIPAA) but it can work in your favor because, hey, usually someone tall & deeper-voiced. Greet them sweetly and thank them for being your chaperone — they need to know you’re to be protected, in their mental framework.
– You can ask about recording the visit, but be prepared for shock & horror. Being recorded is poison in some facilities because of legalities and liability concerns — and the way words can get twisted in court. If your doctor is fine with it, great! You can review it with your notebook and Merck Manual Consumer Edition.
There you have it.
