Chronic Pain Patient Speaks Up and Fights Back Against the Opioid Stigma

Blogger, Chronic Mom, shares how she may have died without the use of opioids

by Pamela Kaufman Health Writer

We’ve all read the terrifying headlines about the over-prescription and abuse of opioids and the tens of thousands of overdose deaths caused by opioids each year.

Politicians, policy makers, and medical experts have been arguing about the best way to solve this public-health crisis. Oregon, for instance, has debated a change to its Medicaid policy that would severely limit access to prescription opioids for chronic pain, with a forced taper for all chronic-pain patients already on these medications — no exceptions.

Amid all the shouting, the voice of chronic-pain patients terrified of losing their opioid prescriptions has been largely drowned out.

One patient determined to be heard is a Houston writer named Shelley Smith. Smith, a 34-year-old mother of an 8- and an 11-year-old, describes her daily battle with fibromyalgia and Lyme disease on her blog Chronic Mom. She relies on low doses of prescription opioids to help get her through her worst pain episodes.

Shelley worries about the future. “My doctor has been fairly helpful with helping me to manage my pain,” she says, “but with the current opioid hysteria her hands have become tied. I don’t expect she’ll be allowed to prescribe pain medication much longer.”

Here, Shelley answers five questions from HealthCentral via email about the “addict” label she pushes against, the effectiveness of social-media campaigns like #dontpunishpain, and the changes she’d like to see in the world that would help erase the stigma.

“The stigma against opioids was almost responsible for my death.” -Shelley Smith, Blogger, Chronic Mom

HealthCentral (HC): Can you tell us a little about how you manage your pain and where opioids fit in?

Shelley: On a day-to-day basis I use pain-relief cream, I practice yoga, and I practically live on my heating pad. But sometimes the pain will still spiral out of control. This usually happens when I do too much physically. This is where a small dose of opioids fits in.

At the end of a physically strenuous day, when my pain level is ramped up to excruciating levels, I take one pill so I can sleep. Otherwise I’ll be up all night, my pain levels will continue to rise, and it might be days before I can get the pain under control — days during which I’ll basically be bedridden and unable to take care of my children or do anything.

Shelley Smith
Shelley Smith says she’d never be able to travel if she didn't have access to opioid pain medication. / Shelley Smith

HC: Can you talk about the stigma attached to using prescription opioids?

Shelley: The prevailing attitude of both doctors and society is that anyone who is on opioids must be an addict. Long-term chronic pain is no longer considered to be a valid medical condition, and patients are often told to “just get over it” or to take a Tylenol.

I personally have a fantastic doctor who does her best to manage my pain, but every time I see a doctor for a different reason I’m immediately accused of being an addict before they even consider my medical condition.

I suffer from reoccurring kidney stones in addition to chronic pain. The last kidney stone I had got stuck and caused me to go into sepsis, but the ER doctor refused to help me because he thought it was a ploy to get more pain pills. It took another trip to the ER and a different doctor to realize I needed immediate surgery. The stigma against opioids was almost responsible for my death.

HC: Do you worry about addiction?

Shelley: I lived in pain for years before I took opioids because I was concerned about addiction. I only gave in because I was bedridden and could no longer function. That was in 2014. Because I have been on the same small dose for four years, I am no longer worried about addiction. Taking more drugs than I need has never occurred to me because I do not get a high from pain medication; all I get is less pain. I actually don’t like the way pain medicine makes me feel — foggy and disoriented — so I avoid it as much as possible.

HC: How successful has the chronic-pain community been in pushing back against the “addict” label?

Shelley: The chronic-pain community has been struggling to advocate for itself. There have been “Don’t punish pain” rallies, as well as letters and phone calls to Congress. There has been some online advocacy with the use of hashtags like #dontpunishpain, #painpatientsmatter, and #patientsnotaddicts as people in pain try to get the word out that they are suffering. Some advocates have even started tracking the suicides that happen when people in pain get their medication taken away.

However, these efforts are generally not taken seriously by society. Too many people have heard stories about someone who died of a heroin overdose after they became addicted to opioids because of a dental procedure, and those people have little sympathy for those in pain.

HC: What do you think needs to change, socially and politically, so that chronic-pain patients can get the support they need?

Shelley: First, society needs to recognize that the problem is not people with chronic pain, the problem is addiction. It doesn’t do society any good to label an entire population of people as addicts, and then refuse to treat either their pain or their addiction. If we’re serious about dealing with the problem of addiction, then society needs to stop judging addicts and start getting them access to treatment.

Second, society needs to recognize that dependence and addiction are two different things. People with chronic pain are often dependent on their medications, but they are not addicted. They are dependent because their body has built up a tolerance, they are dependent for quality of life, and they are dependent because nothing else has worked for their pain.

Third, the mainstream media needs to stop conflating illegal opioid deaths with prescription opioid deaths. They are often incorrectly reported as the same thing. Currently, the majority of opioid-related overdose deaths are due to heroin and illicit fentanyl, not prescription opioids. However, most people are not aware of this because the media lumps them all into the category of “opioids.” If more people were aware of the deaths due to heroin, the stigma against pain patients might fade.

Pamela Kaufman
Meet Our Writer
Pamela Kaufman

Pamela Kaufman got her professional start covering health at Vogue, where she wrote two columns on news and trends as well as feature stories. Her interest in healthy eating brought her to Food & Wine, where she became executive editor. Today she writes articles about health and food, profiles courageous people living with chronic disease, and pursues all kinds of great stories. You can follow her adventures as an eater, mom, and traveler.