How long have you been in the system?

The medical system, I mean. I’m talking about the chronic pain and illness patients ― like me ― who make a pilgrimage to the doctor’s office month after month, year after year, until the pain stops (or we die).

Photo via Visualhunt

You know someone like this, since one in three people suffers from chronic pain in the United States. That’s right – between you, Mom, and Dad, statistically one of you is dealing with a physical or mental ailment that ranges from mild to debilitating, and has lasted longer than three months.

That’s pretty loose criteria. I sailed by that marker about 12 years ago.

When I was 17 our car was rear-ended by a man driving 65 miles per hour while we were stopped because of traffic. My aunt was the front passenger and my mother was in the driver’s seat. I could see my mom’s eyes widening in the rear-view mirror. I had enough time to think, “Oh, no,” and then I felt a force hit us that shook my entire world. Everything in the trunk ― luggage, golf clubs, my cousin’s saxophone ― slid forward and slammed against the back of my seat. The impact broke my spine in four places. Only three of the fractures were found after two weeks of staggering around on painkillers and taking the SATs for college; the fourth healed incorrectly, calcifying over a cluster of nerves.

Nine years later, my car was rear-ended again. It was a rainy day, and I’d left work late. Since that day, I’ve said to myself repeatedly, “If I’d been on time, maybe I wouldn’t have gotten hit.” A young woman in a rusty sky-blue sedan was driving at 35 miles per hour and skidded into my Elantra ― almost half the speed of my first accident, but it still required two cervical fusions.

Chronic pain patients have a moment when they realize they might be in this system for a long time ― an overwhelming system of insurance referrals and co-pays and specialists and medications.

On October 1, 2016, I’ll have been in the system for 12 years.

I realize now that, comparatively, it was tolerable at first. I saw pain management specialists, physical therapists, aqua therapists, chiropractors, manual therapists, acupuncturists, and yoga therapists – anyone who took a co-pay.

Then the system starting making decisions for me.

When Insurance Chooses Your Care

“We apologize, but we cannot accept you as a patient at this pain management facility because you have a relationship with another clinic.” This, paraphrased, is a letter I received when trying to change health centers. They said I couldn’t be seen unless they had a procedure that my current doctor did not offer. How would I know what procedure I needed until I met with them? How could I order from the menu without reading it? I tried to explain this to their staff. No luck.

I fled my pain management center when they substituted deep breathing for medication. (Side note: I was brought up by alternative medicine and have nothing but respect for it. My father started in athletic training before becoming a physical therapist and then a bio-integrative therapist.) I found a different hospital that still believed in medication… until the system cracked down.

You Cost Too Much Money

I received a chilling letter from my insurance company that said I was seeing too many “out of network providers” and included a list of my network’s physicians. Changing doctors when you are on a drug regimen is challenging; everyone surveys you with suspicion, especially in this climate with chronic pain patients being characterized as pill-seeking deviants. When it takes upward of 12 years to find the right medical professionals, nobody will stop me, much less an insurance company.

But what did the letter mean? That letter arrived on a Friday afternoon, too late to call their office. I spent the weekend thinking I’d have to find new doctors or pay obscene amounts of money to feel halfway decent. It was only at 9 a.m. the following Monday that I was informed, “Oh, you can still see your specialist! They just won’t be billed as Tier I.”

That was when I felt the walls closing in. If I hadn’t asked, I would’ve assumed that my doctors were no longer covered. I’d never felt hindered by the system before. Small attempts had been made to rein in my care, but nothing like this. I was nothing but a patient code number in a vast insurance network. Nobody cared about fixing or treating me.

It’s not entirely about insurance coverage. Other pain sufferers have reported how difficult it is even for established patients to get medication under the new CDC guidelines. In the end, coverage doesn’t matter if you can’t get prescriptions.

“I won’t have trouble,” I thought. “I’ve been in two car accidents. There are more than 1,000 pages of medical records.”

But the system doesn’t care how much proof you can produce.

You Can’t Have Meds

I had an appointment with my pain management doctor the day after the CDC’s opioid conference here in Boston. That was perfect timing. Before the appointment, it hadn’t been hard to receive medication. I’ve needed opioids for more than a decade, but now every prescription is questioned or, in Walgreens’ case, denied. My doctor admitted how terrifying the conference had been. And these are guidelines, remember. They’re not laws.

Blocking access to Vicodin or Percocet, I can understand. But Tramadol? It’s a synthetic opioid with a low risk of addiction when used long-term. Explaining that Tramadol barely covered the damage from my first accident, much less the second one, led nowhere productive. It doesn’t matter how much pain I have or how I do everything “right,” as in therapy, yoga, over-the-counter medications, topicals, wearables like the Quell pain relief device, and far more. Every appointment is now a fight. I spend days worrying about whether I’ll find myself without medication. I try to prepare for what I cannot prepare for.

The System Has Abandoned Us

Chronic pain patients are held captive and abandoned by this broken medical system. The message we hear is that doctors are too afraid to worry about our suffering. How can a doctor effectively treat patients when he’s waiting for the state licensing board to come knocking, saying he’s being investigated for overprescribing? As an attorney, I can understand. Professionals work hard for licenses. However, I’m not telling my clients, “Sorry, I can’t talk to the IRS on your behalf. There are too many people in debt. I know we’ve been helping you, but we can’t do that anymore. Have you looked into financial literacy classes?”

Studies say that opioids are not useful in the long run and can actually harm patients, causing opioid-induced hyperalgesia (a heightened sensitivity to pain). That’s not a good outcome. But some of us have no other options. That is the crux of our argument. You cannot remove our sole option and leave us with nothing, especially if we are using the medications as prescribed.

In the meantime, what are we supposed to do? I’m preparing for my medication to be taken away at any moment ― which has already caused a patient to die from a stroke caused by abrupt medication cessation, as I learned in an online advocacy group.