The Heart of The Matter
Hi Byte Wellness Fam!
How are you feeling?
I’m feeling refreshed- partly because I’m recovering from a common cold (haven’t had one of those in a couple years) and am finally catching up on sleep.
But, also, I feel refreshed because I appreciated the nuanced self-advocacy perspectives that our community shared in our text thread and in our #PhyteWellWednesday Workshop over the last week. Check out the discussion question and scroll down to see the Workshop.
Discussion Question
Have you ever had to fight to be heard/seen in the healthcare system? What strategies worked for you?
In our #PhyteWellWednesday Workshop this week, we shared our experiences advocating for ourselves in a variety of healthcare settings. We walked through a range of strategies that have worked in the past to help us be more seen and heard. Check out the recording here.
If you’re not getting invites to the weekly workshops, jump on the text thread: Text TEXT to 1(224)302-6224.
We spent this week talking about healthcare self-advocacy for obvious reasons. The data show that Black folks and Black women, in particular, are notoriously under-treated for pain from any number of causes.
It follows that we’d need an airtight strategy to make sure our symptoms aren’t overlooked by the provider we’re paying to help us.
Getting to the Heart of the Matter
Heart attack symptoms were a useful jumping off point for our discussion. It turns out that most of the landmark studies that doctors used to name common heart attack symptoms mainly included men.
Big surprise! What these studies taught us is that the classic symptom of crushing chest pain radiating to the arm is most common in men having a heart attack. But, newer studies show that sometimes, men (and women) having heart attacks don’t have crushing chest pain.
Instead, they might feel nausea or extreme fatigue/shortness of breath, or back pain between their shoulder blades.
The medical establishment calls these “atypical” symptoms because they’re different from the typical crushing pain.
When we show up with these “atypical” symptoms, they are more likely to be written off as mild complaints. And, we are more likely to be written off as complainers without receiving the full medical evaluation that would show we are actively having a heart attack.
Get this- the newer studies make two important points:
1) Typical symptoms are still most common for women.
Women are more likely to show up to the doctor with the typical heart attack symptoms (crushing chest pain) than the atypical symptoms that are easier to miss.
2) But, typical symptoms are less common for women than for men (74% vs. 79%).
Compared to men, women are more likely to show up with the atypical symptoms (shortness of breath, nausea, back pain, etc).
Considering that these “atypical” symptoms show up in as many as 11%-16% of heart attack cases, maybe we should stop calling them “atypical”.
Missing a heart attack is a huge deal because it means we missed an opportunity to revive our heart muscle. A heart attack means heart muscle is DYING!
Getting the the hospital in time to have the right meds and procedure could make all the difference in how much muscle dies. We’d need blood-thinning meds and a catheterization plus stent to open the blocked artery that’s starving the heart.
If only a little muscle dies, we might recover and get back to our normal lives. If a lot of heart muscle dies, it may never recover; we might have to manage the rest of our lives with severe heart failure caused by a heart that is scarred, weak, and unable to pump much blood forward to the rest of our bodies.
With severe heart failure, we can’t move much without being out of breath. Our lives could change completely… all because we didn’t get the right heart attack treatment at the right time.
Pumped Up
As with a heart attack, a missed diagnosis can be devastating. So, we’ve got to push providers to hear us by clearly articulating our problems and keep searching for providers who are willing to listen and then work with us.
Our conversation in the #PhyteWellWednesday Workshop highlighted the fact that you all (as usual) have gone above and beyond in taking your health into your own hands. Not only are you all doing the work of being heard in order to get an accurate diagnosis, but you’re also advocating for treatment that aligns with your values.
I LOVE THIS FOR US!!!!
In research on medical mistrust, that’s related to Values Trust. Values Trust is the belief that a healthcare institution or provider will acknowledge your personal beliefs and goals when it comes to making a diagnosis or prescribing treatment.
An example of Values Trust: A woman has heavy menstrual bleeding and needs a blood transfusion. But, she’s a Jehovah’s witness and doesn’t believe in receiving blood transfusions for religious reasons. She’d have Values Trust in a doctor who works with her to improve her blood count without requiring a transfusion (even if a transfusion is the most direct way to reach the goal).
In our Workshop this week, we applied that concept to the treatment discussion we’d have with a healthcare provider after a type 2 diabetes or pre-diabetes diagnosis. Do you want a chance to minimize meds by exercising more and eating more veggies? (That’s a strategy that was more effective than the medication metformin in preventing diabetes when it was done effectively). Or would you rather take a medication? Or are you open to some combination of both? In the Workshop, most of our community was comfortable taking a med as long as they were also counseled on the important lifestyle changes that help manage the condition.
Compared to our White counterparts, we historically have more mistrust of health providers when it comes to competency (doing a good job medically) and values (engaging us in a way that shows respect for the way we see ourselves). The data we’ve reviewed time and time again suggest that our mistrust is well-founded.
We have good reason not to trust that we’ll be accurately diagnosed because we’re often not. We have good reason not to trust that we’ll be offered the full berth of treatment options (including ones that fit our beliefs about health and wellness) because we’re often not.
But, dear community, we don’t settle for feeling sorry for ourselves. We find ways to push toward more and better life. Here’s an easy-to-remember approach to self-advocacy in healthcare.
Taking Care of M.E.E
Mindfulness: Get in touch with what feels right and wrong in our bodies
Expertise: Know what symptoms might mean in your body, what conditions they might point toward, and get familiar with the different ways to manage conditions.
Evaluation: Be able to articulate what balance of treatment/management strategies you’d prefer (habits vs. meds)
If you have a chance to give these a try at your next doctor’s appointment, let me know how it goes!
Happy Healthy Living,
Dr. Wuse