Expectation: You schedule a telehealth visit, confirm, and then attend it. Discuss any changes, review treatment options if necessary, then go on your merry way, mostly self-managing a chronic condition.

Reality (a thread): You schedule a telehealth visit, reach out to confirm the day before, and learn you won’t be seen because your insurer hasn’t paid for the previous one.

You exchange multiple messages with the practice, provide a link to your insurer’s policy, but are ultimately told to “contact your rep” when attempting to decipher what it is you need to do to be seen.

You’re not sure who your “rep” is, but send an email to your attorney outlining your issue and asking for advice. You feel shame about being the type of person who has an attorney engaged in your health care.

You don't receive a response.

You call the managed care organization who oversees your care and ask to speak to your case manager, hoping she might clarify what is needed. She’s not your case manager any longer, so you leave a message for someone else. You feel frustrated.

You don’t receive a response.

You call the new case manager again, but go through the switchboard this time so the contact attempt is documented in their system. (You’ve learned!) You take solace in seeing that call logged, proof you’re actively problem-solving.

You receive a call back the following week with an apology. You learn all about your case manager’s personal experience with pain and why she didn’t need treatment fifteen years ago. You feel invalidated, not connecting her injury to your (very different) experience.

You don’t learn her name, or at least you don’t retain it. Why bother? She’s the fourth or fifth case manager you’ve had this year. You do learn, however, that a different physician needs to complete paperwork for the first physician

(That doc doesn’t actually treat you, but was assigned as your Physician of Record within your insurer’s system after surgery last year. You’re keenly aware that they’d like to discharge you, but no one else seems willing to take on the paperwork. You feel like a bother.)

In any case, this is starting to feel too complicated for a rushed phone call to a busy practice, so you go to the patient portal for that other physician, hoping to explain what you need in order to resume treatment with someone else.

Unfortunately, you discover that their patient portal has switched to a different platform, so you need to create a new account. But first you need to get a special code to register. You call the POR, guess which voicemail may be pertinent in the phone tree, and leave a message.

Several days later you receive an email with the secret code and create a new patient portal account. You discover, however, that your shiny new account isn’t linked with the provider you’re attempting to contact.

So you call your (non-treating) provider and leave a voicemail attempting to (briefly) explain what you need and request that they connect their practice with your patient portal account.

You receive no response. You probably guessed the wrong voicemail number on the phone tree.

You fill out a support ticket in the patient portal seeking guidance on how to link to your provider, and the following day you receive a response that it won’t be possible until you first have an office visit with that provider. Who, as a reminder, doesn’t actually treat you.

So you leave another voicemail for that provider. You receive a callback, attempt to explain an insurance issue you don’t fully understand yourself, and ultimately just ask that Provider #1 and Provider #2 speak directly.

You hope they eventually do.

Because you don’t understand which form needs to be filled out by which provider under which conditions. You don’t know what needs preauthorization and why. You have no idea who makes these administrative decisions, or where to find this information.

You just know that you want help, and that the system is set up in a way that doesn’t support you and your recovery. You question if anyone within that system cares. You wonder why so much energy is spent on controlling costs and so little on supporting outcomes.

And then a month later you receive a letter stating you’ve been scheduled for an appointment… not with your treating physician, but with yet another independent medical examiner. A stranger who - after some reading and a brief clinical encounter - determines your future care.

You feel resigned to feeling disbelieved. You still don’t know if or when you’ll see your treating physician for that “simple” routine telehealth visit. At this point you don’t know if or when you’ll see them at all. It’s starting to feel pointless.

But if you do walk through those clinic doors again, you’ll be bringing all of this with you. And even though that provider may have no indication what it took to get this appointment, they’ll be one of the few human faces you see within this inhumane system.

When that provider asks how you’ve been feeling, what you’ve been doing, what will you say? Can you set these frustrations aside? How can you fix - or at least address - the iatrogenic harms of the system without being labeled a “problem patient?”

What do you do when it’s the system that’s the problem?

You might turn to self-management, sure. But how likely are you to embrace that if you already feel like your agency has been usurped, your self-efficacy stolen, and that you’re only stumbling along alone as a last resort?

We’ve been touting telehealth as a fantastic solution to many issues of access within healthcare, but when that virtual clinical encounter is built on the same shitty systems as before, we won’t succeed.

We celebrate self-management as the primary indicator of living well with chronic conditions, but when we don’t provide some framework for those who need additional support, they will continue to fall through the cracks, never having had a chance to succeed.

We built inhumane systems that prioritize cost savings above all, and in doing so have created a world in which administration of healthcare takes more resources - human, financial, emotional - than the care itself.

You don't believe it has to be this way.

But what do you do?