The Canary in the Mind

We are patient zero of the opioid epidemic. We are patients who endure chronic pain from a wide variety of ailments and conditions.

At age fourteen, I was prescribed opiates to treat a degenerative lumbar disc. Doctors told me to “Take this pill and the pain will be gone.” And it did go away, for awhile.

Luckily, I had medically literate parents who advocated for me, eventually demanding that doctors find other treatments for my pain which was becoming chronic. As they gradually reduced my medication (“stepping down” as it is called), my pain got much, much worse and like many in my position, I fell into a long depression.

Throughout the years, due to either spinal surgery or pain, I’ve used opiates, but only for very short periods of time. Until a few years ago, doctors prescribed opiates for common, every day pain, or to help me sleep. Rarely did they offer alternative pain management methods. Many just wanted to give me another pill. Some did suggest acupuncture. Ultimately, during doctor visits, I stopped mentioning my pain.

My pain management solutions did not come from the medical field, but instead from a number of in-person and online support groups for people with chronic pain. I owe so much to these groups. Today I manage my pain through a multidisciplinary approach that incorporates non-opioid medication, exercise and mental health counseling.

I have found these online support groups insightful and also tremendously helpful.

Until now. The words used and messages posted have changed. Popping up far too frequently are posts by people who have had their opiate prescriptions reduced or halted who write about ending their lives.

Recently, I read a comment on an article about suicide deaths linked to a doctor-prescribed opioid reduction. “That’s me in two months,” read the comment, “when I run out of my backup supply.” Joking or not, the message is clear. People who use opiates to treat their pain are feeling hopeless and scared that they will no longer be able to get the relief they need.

I understand the fear. Chronic pain patients who are being taken off their long-term opiate treatments experience a period of what’s called hyperalgesia; a heightened sense of pain. Added to that are the effects of withdrawal as their body adjusts to less and less medication.

Each chronic pain patient experiences pain differently. Over time, our nerve pathways become wider and hyperactive, actually increasing the number of pain receptors in our brains. It means that even when the pain stimulus has stopped, a chronic pain patient’s brain will still receive pain messages at a higher and longer rate. It’s why a chronic pain patient can’t ignore pain. It’s why we become pain-avoidant.

I work in the field of suicide prevention education and I understand that the articles and memorials being posted in online support groups are not only problematic but dangerous. They create a narrative echo chamber and for those who are at risk, seeming to provide a solution.

In the public health field, they call it ‘unsafe messaging’ when suicide is normalized or romanticized. Unsafe because it calls attention to the suicide, making it seem normal, as if there are no other options.

The panic I feel when reading the comments in my support groups is palpable.

Then I get overwhelmed. How can I encourage more dialogue — and action — around effective solutions?

I know that chronic pain can be managed without opioids. It takes time and effort to learn which combination of non-opioid meds, exercise, mindfulness and mental health counseling can work for you, but it can. Having traveled this road, I know it is difficult but I also know it works.

I will have nerve pain and partial paralysis in my leg forever. I am still tweaking my pain management, likely a lifelong commitment. I do have days without pain, sometimes even weeks or months.

To my chronic pain community: You must be your own medical advocate, a statement I know may make you feel exhausted already.

If your doctor plans to step you down or take you off your opioid regimen, tell them you will need help.

Tell them you will need a mental health therapist who understands withdrawal and chronic pain.

Tell them you will need non-opioid medication, which depending on your type of pain could vary. Tell them you may need physical therapy.

I’m sorry that you will have to demand help. I’m sorry that this kind of help and support may not already be offered. I’m sorry you may need to do some research to find support.

I’m sorry you have to do this at all, because it is NOT your fault. You followed a doctor’s orders. They said, “Take this pill and the pain will be gone.” And you did. I did too. We all did.

That does not make us criminals. We are people who suffer from chronic pain and it is our right to seek appropriate pain management. Don’t let your doctor restrict your access to opioids without a realistic alternative plan that has your best interest in mind. And don’t feel like you have to do this alone.

You are not alone. Ask friends, family and your community for support.

We are here in the online chronic pain support groups, keep writing and talking about your experience. We are here, we listen, and we understand. We can help.