I had to take opioids to be able to write this article. Yesterday, I took opioids so I could meet a friend for lunch. The day before that, I tidied up my living room and—you can guess—opioids then helped me to be able to go grocery shopping instead of spending the rest of the day just breathing through the pain.
It’s difficult for others, including lawmakers and doctors, to understand this kind of pain. People who have not experienced severe chronic pain don’t understand that it is akin to a wildfire razing your life, leaving only ashes in its wake. It means moving through your day feeling as if you’re walking on broken bones or engulfed in flames. It is the kind of pain that makes you look favorably upon hacking off limbs, drilling a hole into your skull, and even death. It disables your body, changes your brain structure, and leaves you isolated and lonely.
I’ve lived with rheumatoid arthritis (RA) for half a century now, and while it’s well-managed with treatment, the pain that comes with a chronic condition like mine (and many others) won’t ever go away completely. People like me are not the enemies in the war on opioids. We are the casualties, thanks to the restrictions many states are implementing as a result of highly controversial guidelines from the U.S. Centers for Disease Control and Prevention (CDC) that make it harder for people who desperately need these medications to actually get them.
The CDC itself realized the potential fallout from these directives. In April 2019, the organization published a warning that these guidelines should not be misapplied to patients who legitimately need opioids. Still, people who live with pain continue to face real barriers to getting this form of treatment.
The Facts of Opioid Addiction
The thing is, most people who take opioids for chronic pain do not get addicted. In fact, exposure to opioids results in addiction in only a small percentage of people, according to a report in the New England Journal of Medicine. As well, the annual National Survey on Drug Use and Health repeatedly shows that 75 percent of people who misuse opioids become addicted after taking medications that were not prescribed for them.
Don’t get me wrong, I am not belittling the tragedy of opioid addiction and overdose. I am, however, trying to shine a light on the human cost of significantly limiting access to these drugs.
Consequences of Not Treating Chronic Pain
Recently, I asked members of the chronic pain community to share their feelings about the war on opioids and its impact on their lives. Reading the responses was heartbreaking.
Many are having their prescriptions reduced to the point of being cut in half or forced to switch to another, less-effective, medication, leading to increased pain. I am not talking about mere twinges. This is often the difference between being able to function and barely having your pain controlled, with subsequent impact on life, work, family, and joy.
That impact should not be shrugged off by anyone. The pain that requires opioids is severe. Without it, people wake up crying in the middle of the night. One friend told me she would limp into the bathroom to cry into a towel every night so she wouldn’t wake her husband and kids with the sounds of her despair.
And it gets worse. Without adequate treatment, people become depressed, even suicidal. I have been there myself, staring into the abyss and only making it through by setting an end date. I was lucky. Another type of medication controlled my condition and therefore my pain, but if opioids have been your only option, other drugs might not address your pain.
Even if a doctor is willing to prescribe opioids—and without treating you like a drug-seeking addict—it can be difficult filling the prescription. Some states, New York, for instance, limit the number of certain opioids a pharmacy can stock. One friend was denied at multiple pharmacies because the prescription that enabled him to function would wipe out their stock, leaving nothing for other customers. Most jurisdictions now prohibit refills on opioid medications, meaning we are back at our doctors on a monthly basis to get another prescription.
This can be incredibly physically difficult for people who have the kind of chronic pain that requires these treatments. This difficulty is then compounded when followed by the monthly quest for a pharmacist who’ll actually fill the script, which can require accepting their suspicion, questions, judging glances, even lectures, all in full view of every other customer. You bite your tongue until it bleeds, because without the medication, you have no life.
And the result of chronically untreated pain can be deadly.
Rep. Susan Wild, D-PA, recently started using her platform to bring light to the link between chronic pain and suicide. Wild’s long-time partner died by suicide, possibly as a result of the chronic pain he’d been dealing with from post-operation nerve damage.
Joining the Resistance
The reality is that opioids are deeply restricted and, I believe, will likely be banned in the future. These measures have been taken without the existence of a viable alternative, such as a technique or medication that treats pain as well as opioids.
And that is unconscionable.
It is cruel and inhumane to tell a person who has severe chronic pain that they cannot get a particular medication, but should try yoga or meditation or some anti-inflammatories instead. (In case you’re wondering, none of these examples are figments of my imagination—all reflect stories I’ve been told by people in the community).
Although these techniques and more may be part of that individual’s pain-management toolbox, leaving out that additional tool called opioids may very well make the difference between a life with tolerable pain and one where every moment of every day is accompanied by unmanageable pain.
I am dependent upon opioids. And I’m not talking about the physiological kind of dependence which, by the way, isn’t the same as addiction. No, this is about the ability to make a living, to have friends, to help my family, to sleep the night through, to laugh, to love. Opioids do not take away my pain, but they reduce it enough that most days I can do all of those things. Most days, I can have a life.
I watch the war on opioids and like so many others who depend on this medication, I worry. About access, about prohibition, about the impact the ever-tightening restrictions will have on my life.
I share the reality of my life with severe chronic pain in the hope that adding my voice to the debate might make one more person start to ask questions and insist upon nuance. I refuse to be silenced, refuse to be left in the shadows. And I do it as a form of resistance in this war in which I and so many like me have become collateral damage.
See more helpful articles:
Myths about Opiates and Addiction Affect Pain Management
Opioid Treatment for Cancer vs. Non-Cancer Pain: Is There Really a Difference?
How the War on Opioids Affects My Health