Don't go to the doctor without this trick (Tip #3)
Saved the best one for last.
Remember last week, when 88% of you said your medical appointments were “massive disappointments?”
That shit ends today.
(Technically it ended two weeks ago, when we kicked off this series—Tip 1 here, Tip 2 here!)
But this shit also ends today because three tips is plenty. For now.
Who died and made me queen of doctor appointments?
Technically no one, but also: almost me? I’ve plummeted down the proverbial spiral staircase of bad appointments since I was 2, so that’s 40 years of…something.
Now, my appointments are respectful, useful, fruitful, and actually needle-moving (as much as they can be for a disease with no cure where I’ve exhausted most options.)
How? Because I record the appointments, I know how to say no without bruising any egos, AND I…
3. Get to the good doctors faster.
If you just rolled your eyes so hard they sprained, valid. I know. YOU’VE TRIED getting to the gooders. Probably most of the suggestions below. (But if nothing else, give it a skim to make sure *I* haven’t missed an idea.)
Why? Because it’s worth it. ONE telehealth with my ME/CFS doctor is worth at least five different appointments with local clinicians trying to piecemeal together treatments and tests. It’s one of the ONLY times my provider educates me instead of me trying to secretly educate them.
First, find ‘em.
Dig them up through social media and their connections:
Online patient groups for rock stars. Patient groups on Facebook, Reddit, and disease-specific forums like Health Rising usually talk up their disease’s “rock star” doctors—hyper-specialized clinicians with unique tools, skillsets, and experience.
These patient groups also point you to local finds—even when they aren’t local! I found my amazing PT by posting in a regional group thinking I’d need to travel out of state. Turns out, a hypermobility-focused PT was moving right to my town.
Real-life local patient contacts. I’ve met fellow patients in patient groups, posts on my local town “Ask Anything” page, here on Substack, and even random friends where neither of us knew we were ill until one of us dropped the well act.
Your current doctors. Once you crack into ONE doctor who “gets it,” you can get their referrals for other specialists, aka their like-minded friends.
Search for them in professional directories:
Depends on your personal disease roster, obviously, but look for a governing body of sorts that might have a “find a practitioner” section.
My fave: the Ehlers Danlos Society Professionals Directory: I have hEDS type III, not the genetic sort, and it’s not even my worst symptom, but these docs tend to know our disease cluster, including the comorbidities beyond EDS.
You can also get hyperspecific and look for modalities you know work well for you such as Somatic Experiencing, NOAIMT, or Functional Medicine—just as examples.
Not every doctor who’s on board will be listed. Various reasons…sometimes they’re missed, sometimes they don’t keep up certifications, whatever. If you see one close but not close enough, reach out and ask if they know anyone in your area.
Look for PAs (especially for popular docs):
Neurosurgeons, gastroenterologists, gynecologists, and other specialized providers are pressured to work at the top of their fields—performing spinal fusions, excising gallbladders, birthing babies, and all the other things you want someone who pretty much does that all week to do.
They usually don’t have time to sit for a long, educational appointment with a complex patient—and that’s okay, because their PAs (physician assistants) do.
Physician assistants can do nearly everything a physician can (including ordering tests and prescribing medication except Class 1 Controlled Substances). Plus, the bigwig doctor still consults on your case while your PA runs interference.
In my experience, PAs are often more patient, more personally helpful, more experimentation-curious and just generally more chronic-illness friendly than the busy leading physicians they work under. Not always true, but don’t feel like you’re getting “less” with a PA.
Another good bet? Reader Katherine Ashmore recommends nurse practitioners!
Second, review ‘em—the right way.
It’s worth overlooking two and three star ratings when you’re vetting. (!) Here’s why:
If you READ the reviews (and you should), you’ll find many doctors are reviewed for things their office staff botched or insurance squabbles. While it’s helpful to know if the staff is sociopathic (happens), these low reviews are not necessarily reflective of the doctors themselves.
And, timestamp matters. My own “best” doctor has a 3 star rating thanks to a one-star rant from when a patient felt she was telling her that her illness was in her head. Bruh, but it was late last decade. He’s grown since then (not to mention gotten Long Covid himself, so how’s that for empathy?)
And in the other camp, sometimes you need to raise an eyebrow at five star reviews—because did those people have your kinds of issues? A “five star” PT focused on elite athletes, for instance, deserves a skeptical look. Search reviews for your disease keywords.
Third, book ‘em. Now.
Most great doctors are backed up for months (at least for new patients). Book them now. You can always cancel or postpone if it doesn’t fit four months from now.
Fourth, afford ‘em.
A staggering number of Long Covid and ME/CFS doctors fled insurance in the last few years. The rest are out of state, which your insurance may or may not cover.
Gah. But:
You can fight insurance on the out-of-state thing, potentially, if you can prove no other doctor locally can provide adequate care.
Your insurance may still pay “out of network” benefits if you submit a Superbill. I always submit. It’s often a dismal return, but usually that’s better than the $0 you get if you don’t try.
Some, but not all, take on a limited number of patients in need. ASK.
Use the portals. (Responsibly.) You can ask doctors questions between appointments, if they’re simple and straightforward…which can save pricey appointments. Note: some off-insurance doctors charge for complex questions.
If you haven’t worked with a Long Covid, ME/CFS, or your-diseased-highly-specialized provider yet, it’s worth investing in one or two appointments. You’ll cover years worth of past appointments and probably get enough suggestions for 6 months.
And even if you don’t work with a bigwig (it’s fine, hasn’t cured me), you want good docs on your side for things like ordering disability placards, getting notes for work, adjusting meds, and all that jazz.
If you’ve never had a gooder, you might not realize what an uphill battle you’ve been fighting ‘til them.
To all the best doctor appointments! And onto new topics, pronto presto.
A little footnote
All the hot tips in the world can’t MAKE your doctors’ appointments the best. If it bombs, don’t beat yourself up. (But do steal a bunch of cotton balls bc viva la resistance.)
Please tell the class: how did you find your best medical providers?
Guessing it probably wasn’t a highway billboard, but prove me wrong.
I think we’re all Meatscon’ed out (yes?) but here’s a last link if you keep missing it!
Like spoons, but MEATIER. Wait, that makes no sense.
Substack is just the nicest.
In the spirit of letting good things happen, I gleefully accept decaf Americanos at Venmo kira-stoops, any payment you like on the Meatscon, and useful gifts are here.
PS. Take the money, sickaroos:
• Get $100 when you open a new Ally account using this link. (I’ve maxed out referrals, so nothing coming back to me, but enjoy!) This one’s my fave for the buckets feature, which works very well for my apparently bucket-y brain.
• Take $60 off an Electric Liberty Trike like mine with this link (I think it gives me $60, too?) For the cheapest deal, get the “Classic” (aka, old, aka, mine) model or a refurb. I gotta do a post about how good this thing is for low-stamina folks like me!
• Take $10 off Instacart (and give me $10 too!) with this code: KSTOOPS109C5. (My hot tip for good Instacart service: tip above 15%!)
Excellent ideas. Thank you.
Please also consider Nurse Practitioners in addition to PAs. They are often focused on education and quality of life.
I've found almost all my doctors through Facebook groups and sickie websites and asking other spoonies for referrals. I have found exactly zero truly helpful docs by looking at in-network catalogues or websites, or asking my GP for referrals. In fact, I wasted so much time and money doing the latter.
I found my diagnosing doctor by contacting Bateman Horne (which I'd heard about through Health Rising or the groups or... somewhere) and them referring to someone who'd studied with them and started a private practice (since they weren't taking new patients).
I found my next doc by finding out who Jen Brea saw and then getting on a waitlist.
And my next by asking around to see who else is in the field, well-respected, and a woman.
My OCD therapist was a referral from my amazing somatic therapist, who had to ask a friend.
My craniosacral therapist was a referral from another craniosacral therapist who wasn't the right fit.
I just ask a lot. I research a lot. I don't stop til I find someone. I look at the national organizations. I look at the TED talks. I'm not afraid to call the top specialists. My mom is also really good at admin and knows how to get through red tape and fight insurance to get things covered.
If there were one skill I wish I could teach every new spoonie, it's how to do *waves hands around at this post* all of this. Thanks for writing this series.