Editor’s Note: Given the subject matter of this article, the author has asked to remain anonymous.
In my mid-twenties, I had my hopes and dreams destroyed in one of the worst ways possible. After spending years in college, creating plans to go to grad school, and looking forward to a successful career and comfortable life, I got sick.
Over the years, I had been developing severe pain throughout my entire body, but I ignored it as long as I could… until I couldn’t ignore it any longer.
At just 25 years-old, I was diagnosed with multiple autoimmune and chronic pain diseases.
At 26 years-old, I had to apply for and go on disability.
There are very few treatments for the diseases that I have. Nevertheless, my doctors have tried their best. One medication made me so sick that I felt like throwing up, constantly, about four or five days out of the week, and it greatly impaired my quality of life. I took that medication for two years, thinking that I had to try whatever was available to me to treat my symptoms and prevent possible damage to my body, but after two years, I had to stop taking it.
One of the only other options available are infusions that are more or less chemotherapy, meant to destroy my immune system before it has the ability to destroy my body. Right now, I’m being scheduled to begin these treatments in the spring. Even that treatment, though, comes with its downsides: one of the biggest downsides being my inability to fight infections and illnesses, which will likely keep me from participating in some of the activities I enjoy now (shopping in stores, for instance).
During all of this trial and error with different treatments, the biggest hurdle I’ve faced is the excruciating pain, which often leaves me in bed, completely unable to function. For years, I spent the majority of my time in bed. I tried different things to help ease my pain: heating pads, hot tubs, Icy Hot, Tylenol, ibuprofen, nerve medications, oral steroids, cortisone shots…
The only treatment that has ever eased my pain enough to allow me to participate in life are opioid pain medications.
I try not to tell very many people that I take opioid drugs, especially since this “opioid crisis” has become such a huge focus all across the country. Whenever I do admit that I need these medications to function, I feel the judgment and stigma surrounding these drugs. I also feel a huge amount of shame, as if it’s my fault that my pain does not respond to more “acceptable” treatments.
I’ve been treated poorly by emergency room staff and new doctors whenever I tell them I take opioids. I’ve been accused of being a “drug seeker,” despite being doubled over and crying in pain. I’ve had to change pharmacies a few times just to get my prescriptions filled. I’ve had people tell me it’s somehow “all in my head.” I’ve had Medicaid deny important tests and treatments, which I very much need, because they’ve said I’m somehow “too young” to have all of these medical problems.
It’s been an uphill battle. And it’s still a daily struggle.
To be blunt: yes, I’m still fairly young. I’m now in my thirties. For years, I’ve joked about someday finding that magic age where doctors and insurance companies finally admit that I’m “old enough” to have these diagnoses and to need these treatments.
But the truth is, autoimmune diseases can strike anyone, at any age. Even children develop autoimmune diseases.
I have these illnesses, and I am excruciating pain all day, every day, despite what anyone else says or thinks about me. This is my daily reality.
All I’m asking for is pain relief.
I’m not running marathons or building a house or competing in the Olympics.
I need pain relief just to wash my dishes, vacuum my floors, and take my dog out. I need pain relief so I can take a shower and wash my hair. I need pain relief so I can buy groceries and cook dinner.
Without adequate pain relief, I can’t do any of theses ordinary, mundane, daily tasks. Without pain relief, I couldn’t live in my own home. Without adequate pain relief, I don’t have a life at all.
Since the “opioid crisis” has unfolded across America, hundreds, probably thousands, of actual pain patients, like myself, have had their life-giving medications stripped from them.
Pain management doctors have been thrown in jail, clinics have closed, and pain patients have nowhere to go for help now. (I have to travel an hour, both ways, just to see a pain doctor every month.)
Pharmacies have implemented policies that allow their employees to deny pain patients their medications simply on a whim.
Following their loss of any quality of life, many pain patients have committed suicide.
In 2017, the Pain News Network conducted a survey of more than 3,100 pain patients. The results of that survey showed that approximately 40% of pain patients have considered suicide because they were not being adequately treated for their pain.
The Pain News Network claims that new CDC guidelines regarding opioid prescriptions has contributed to these suicides.
I’ve also been there: I’ve been in bed, in agony, thinking that, if I’m going to have to feel this pain for the rest of my life, I would be better off dead. I could not live with pain that severe every single day for the next forty or fifty years. No person could (or should have to) endure that.
As Americans, it seems we’re suddenly very concerned with the number of addicts who are dying from overdoses. (Note: the CDC often conflates deaths caused by heroin with deaths caused by prescription pills, which doesn’t help the situation.) And I agree that it’s very important to highlight those overdose numbers and deaths. Those people are real human beings, with real human lives, with real human families.
However, sadly, there is such an enormous focus on addicts and overdose deaths that we don’t even stop to consider the pain patients, like myself, who are stripped of their medications and forced into a living hell. Pain patient suicides aren’t highlighted, either, despite the fact that pain patients are also very really human beings, with very real human lives, with very real human families.
The Pain News Network asked the CDC directly in 2017 how they were tracking suicides caused by stripping pain patients of their medications, and the CDC more or less answered that they weren’t: they were tracking all other causes of suicide, but they did not acknowledge being forced to live in pain (thanks to their own prescribing guidelines) as a significant cause of suicide.
PNN asked a CDC spokesperson if the agency was conducting any studies or surveys to determine whether the CDC’s 2016 opioid guideline was contributing to patient suicides, and what impact it was having on the quality of pain care. The boilerplate response we received essentially said no, and that the CDC was only tracking prescriptions.
So many of us are being impacted by the new CDC guidelines and laws meant to curb opioid addiction and overdoses, but our voices aren’t being heard. Addicts are being heard. Families of the addicts are being heard. Paramedics are being heard. Politicians are being heard.
The only voices nobody seems to hear are those belonging to chronic pain patients. We are the silent victims in this “opioid crisis.”
You cannot fix one problem and help one group of Americans (addicts and overdose victims) by overcorrecting and causing harm to another group of Americans (chronic pain patients). The efforts to fix one problem has created a whole new problem, but politicians and those in authority are so gung-ho about addressing the original issue, they can’t even see the new damage they’re inflicting.
As for me, I’m extremely grateful to have access to adequate pain relief… for now. Every single month, I make the one-hour trip to my pain doctor, and every single month, I feel an immense amount of dread, anxiety, and fear walking in that office. I live constantly terrified of having my medications stripped from me because of some new law or guideline that ties my doctor’s hands.
When I walk out with that 30-day prescription, it’s impossible to express the amount of relief I feel, knowing that I’ll be able to function for at least the next 30 days.
It shouldn’t be this way.
I know that I have not done a single thing wrong. I did not cause this pain or these illnesses. So why is it that I’m made to feel so much shame and fear? Why is it that people like me are often treated like criminals, when we’ve done nothing wrong and simply want to live a life as close to normal as possible?
I want people to understand that, yes, there is an addiction problem in this country, but those of us who are sick and in pain, as well as the doctors trying to help us, are not to blame.
Addicts’ lives matter.
But so do the lives of chronic pain patients.