'I'm in Agony Day and Night. Doctors Won't Give Me the Pain Relief I Need'

I developed degenerative disc disease (DDD) after being involved in a rollover accident in the spring of 1985 when I was 15 years old.

I was the passenger in a vehicle that the driver lost control of. We went head-on into an electric utility pole which then caught the front tire, causing the car to become air bound and flip over three times.

We landed upside down roughly half a mile down the road. It was 4 a.m. and nobody came to our aid, though multiple cars passed us. Eventually, I managed to pull myself out of the car when I saw gasoline pouring in my line of sight. I grabbed hold of the driver and pulled her out of the vehicle.

As a result of the many spine surgeries I had after the accident I suffered nerve damage, which caused loss of strength, severe pain and spasticity. Immediately following the accident I was unable to walk, use a restroom, bathe, or do much else unassisted.

Back then, the No Child Left Behind Act, a federal law aimed at improving public schools, did not exist. So when my high school made no effort to accommodate me, I felt I had no option but to leave.

Prior to my injuries, I was a trained dancer and singer, with an audition for a performing arts school in New York City. The devastation of realizing these dreams had suddenly been made impossible was huge.

The emotional impact of the accident and subsequent events has taken a great toll on my life over the last 38 years. To this day, depression and suicidal thoughts are not uncommon.

Before the opioid crisis in the early 2000s, I had been on oral medications; morphine, OxyContin, and Flexeril. However, following the "crackdown" on doctors not to provide these types of medications, I was given nothing to treat the severe pain I dealt with daily.

The years in between were excruciating. Daily, I wished for the amputation of my legs, as the most severe pain was from pressure on my sciatica nerves. My husband and children watched me suffer, feeling helpless while trying to advocate for me to no avail. Doctors simply refused to help. I was desperate and felt worthless.

Eventually, years later, I was lucky enough to find a doctor who treated chronic pain using opioid pain medications and I had some relief. I was placed on a slow release form of morphine, and although it helped tremendously, it caused memory loss and blackouts.

I was on this medication for around two and a half years, and despite its pitfalls, it allowed me to be a functioning member of society. I could enjoy times with family and friends and do regular things like grocery shopping.

Many people would take the ability to go to the grocery store for granted, but for me it was a liberating experience. To walk the aisles on my own accord, with no assistive device or help brought great joy to a seemingly boring task.

This doctor had taken care of my father during his battle with cancer, and had become a friend in some ways. She was always open and honest with us regarding the fight she was having over her beliefs on opioid pain medication, and her prescribing methods.

She had opened an evening Suboxone clinic in her practice in an effort to wean some of her patients off, as the government wanted. But she was not willing to just take everyone off completely until she knew she could manage their pain in an effective way.

Eventually, she came under so much pressure from governing bodies that she was forced to close her practice. She wasn't completing things at the pace they wanted. She took her own life on the same day her practice closed, leaving behind two very young boys both with severe forms of autism.

Coupled with the emotional shock of losing this doctor, suddenly being removed from the medications that had allowed me to live a relatively pain-free life was just beyond explanation.

It was if the wind had been knocked out of me, and I knew full well I would not be able to retrieve that breath.

In 2017, over 30 years after my accident, I received an intrathecal pain medication pump to treat pain in the lower lumbar of my spine. While this pump consistently provides me with a mixture of opioid and non-opioid medication, because the drugs are delivered directly to the spine, the dose is extremely low.

I receive doses of baclofen, hydromorphone, and clonidine. However, this method does not treat pain in any other area of my body, or alter my mind the way an oral or intravenous method would.

Two and a half years ago, the DDD started traveling up to the thoracic area of my spine. I had been told that my pain medication pump would provide five years of an 85 percent reduction in pain, and to all of a sudden have another part of my spine cause such intense new pain was almost unfathomable.

It feels as though I received a gift only to have it abruptly taken away from me.

I requested pain medication, but I was told that because of current laws and regulations, coupled with the fact I have this pump, doctors are unwilling to treat my pain further up the spine.

I was left feeling as though my life simply doesn't matter.

As well as pain in my spine I've had various other health issues, including injuries to my ribs and wrist following a bad fall one year ago. However, I am constantly refused pain medication because of my pump.

I don't feel there should be any contradiction between pain medication and my pump. I believe a doctor is capable of ensuring I don't overdose, should they choose to give me pain medication during an accident, incident, or for the chronic pain I now suffer in my upper back.

Since this pain began to spread I have been in agony day and night. I have tried to reason with my doctors regarding my upper spine pain, but the fear they have about opioids is, in my opinion, beyond extreme.

I feel like doctors often gaslight me by trying to convince me of things I know not to be factual. For example, they often tell me: "Tylenol is as good a pain medication as any opioid." Or: "This pain is in your head, perhaps you should see a therapist."

Add to this a new generation of doctors who qualified after the OxyContin crisis mid-1990s, when the FDA and medical boards began a campaign of what I consider to be scare tactics, and it becomes near impossible for those in chronic pain to get the medication they need.

I have spent years of my life in agonizing pain. I believe that often, the question asked by doctors is: "Do the ends justify the means?"

My personal belief is that the CDC definition of addiction is one and the same as abuse, which I do not feel is factual. In my view, an "addiction" is when a person relies on a substance in order to change something.

In these situations, their body undoubtedly becomes accustomed to that substance, but that does not inherently equate to "abuse," which involves someone intentionally taking over the amount they have been prescribed and finding illegal means to obtain more.

The governing bodies making these decisions are dealing with a population of already vulnerable individuals. How do we as a society allow the unnecessary suffering of another human being?

Many chronic pain patients are much less likely to attend hearings, rallies or demonstrations due to the unbearable inability to physically and mentally be active participants in such events.

Even sending off a letter on many days can be a difficult task. This interference affects many children who suffer chronic pain as well; debilitating diseases and untreatable conditions.

It feels to me as though we are becoming a barbaric society, one that leaves vulnerable people in pain day and night, with no compassion or regard for their overall wellness and ability to live pain-free, or as pain-free as possible.

Kristen Grant, 53, lives in Massachusetts.

All views expressed in this article are the author's own.

As told to Newsweek's My Turn associate editor, Monica Greep.

With thanks to The Doctor Patient Forum.

Do you have a unique experience or personal story to share? Email the My Turn team at myturn@newsweek.com.