I have struggled with health issues for most of my life. I’m 31, and here’s a truncated list of some things I’ve dealt with:
Ulcerative colitis with high-grade dysplasia bordering on colon cancer, requiring complete removal of my large intestine and an ileostomy for about four years. In that four years, I managed to have four strokes within days of each other.
As a result of those strokes, I am now legally blind, have short-term memory loss, widespread and painful nerve damage, and headaches that, if spread out among a few people, would knock them all out.
It’s easy to react to the opioid crisis in a very urgent and passionate way. I understand that, and appreciate that this usually comes from a place of concern and care. Unfortunately, however, this leaves a lot of us battling chronic pain in a serious pickle. And pickles are serious business.
I often read and hear people making statements from a place of technicalities. What’s often missing in these discussions is the human element.
So when I get my blinding headaches, or my j-pouch is acting up or my nerve pain is so bad that I’m nauseated, I am resentful. Resentful of people who abuse medications, resentful of robotic and unsympathetic medical mandates, and resentful of uninformed public opinion.
I cannot get out of bed and live my life without opiate pain medication. I have no shame in this. I’ve been through medical hell, and I still would like to have a semblance of normalcy in my life.
I’m blessed to have a primary-care doctor who is not only an exceptional doctor but an exceptional human being.
It bothers me that doctors might be caught between providing compassionate care for me on one hand, and adhering to rigid and unkind (my words) protocol on the other.
Further, patient care around pain is racialized. Studies show that patients of color are met with skepticism and less compassion (ironically, isolating many communities of color from the opioid crisis). This adds another layer of nuance and opportunity for inadequate pain care for nonwhite patients.
I don’t have the answers to this dilemma. But I do have my experience and my ability to try to spread the word about the patient side of this opiate crisis — the one that people with chronic pain did not cause, but are being punished for.
Mariam Hannon lives in Maplewood.