When Waiting Hurts: The Frustration of Delayed Medical Care

Have you ever felt like the system designed to help, is the very thing causing harm?

As a full-time caregiver for my disabled adult son, I've spent years navigating the healthcare maze. I've learned to be persistent. Patient... (I try) Prepared for anything. But what do you do when even your persistence can't cut through the waitlists, the red tape, or the lack of urgency from providers?

Recently, my son developed an infected broken tooth - down to the nerve. The kind that would have most people rushing to the ER and getting help within hours. But because he has a disability, and because he requires sedation for any oral procedure, we were told the soonest available appointment for oral surgery was two months away.

Two months.

Imagine living with a tooth broken to the nerve. Now imagine doing so when you are nonverbal, hypersensitive, and unable to advocate for yourself. That's his reality. And as his caregiver, mine has become a blur of calls, messages, desperate attempts to expedite, all while trying to manage his pain, his anxiety, and my own helplessness. I've made calls to the Oral Surgery Department Head, a number of disability advocate organizations, and even considered a referral to Cleveland Clinic but I've been advised they would likely be further out than 2 months, especially if we've never been there, and asking his dentist for another referral. His dentist did provide another referral but it would be an in-office procedure and I am extremely leery of that with my son's conditions; small airway due to his Goldenhar Syndrome and he has had airway complications in the past which needs to be planned for, along with his newly diagnosed heart condition, an in-office option is not an option for him.

This isn't just about dental care - it's about a broken system that too often overlooks people with disabilities. It's about the impossible position caregivers are placed in: watching someone we love suffer while we beg for attention from an overbooked, understaffed, and often indifferent system.

Why does it take months to treat pain when the issue is urgent? According to the ADA, this is considered an emergency. Why aren't there more providers trained and equipped to serve patients with special needs? And why does the burden fall so heavily on caregivers to navigate all of this - alone?

Every appointment delayed becomes another sleepless night. Another round of antibiotics that may or may not hold the infection at bay. Which if it doesn't - consider the risk of infection into his jaw (hardware) from the previous mandibular distraction surgery and then what.....another separate surgery to remove an infection and the hardware, and how long will that take to arrange if it comes to that?

Another moment of guilt when you can't do more - even when you're doing everything.

I'm writing this not just to vent (though that's part of it) but to shine a light on a reality so many caregivers live with. Our loved ones deserve better, and so do we.

If you're a caregiver stuck in the same waiting game, know this: you're not alone. Your voice matters. And the more we speak up, the more we can push for a healthcare system that sees the urgency in all pain - not just the convenient kind, or the "that's the best paying insurance" kind.

Let's keep talking. Because no one should have to wait months for relief from suffering. Your experience matters. Your exhaustion is valid. And you deserve support, not roadblocks!

Let's keep advocating. LOUDLY. Kindly. RELENTLESSLY. Until care is no longer something we have to chase down, but something we can count on.