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SMCMA Physician

San Mateo County Physician is the SMCMA's official membership magazine. Published quarterly, it includes articles on a wide variety of medically-related topics and personal viewpoints.  The SMCMA Editorial Committee always values member contributions to San Mateo County Physician. Submissions for consideration can be sent to smcma@smcma.org.

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Living with Pain: A patient perspective on chronic pain

By Mizgon Darby

Since age six, I have lived with chronic diseases that started out as Juvenile Idiopathic Arthritis and Uveitis. As an adult I was introduced to an additional list of diseases including Rheumatoid Arthritis, Trigeminal Neuralgia, Endometriosis, Fibroids, Chronic Migraines, Ankylosing Spondylitis, Pericarditis, Costochondritis, and many more itis’. My days are plagued with an endless battle of bringing down my pain and managing my disease to where I can function as a CEO, mother, daughter, and a wife. The multitude of diseases combined feel like my face is on fire, I have a chronic ear infection, someone is sticking a knife into my forehead, an elephant is crushing my chest, there is sand in my eyes, needles are stabbing me in my cornea, and like I am in a full body cast and cannot move from being stiff, and when I do move it feels like the joints in my body are being shaved by a dull razor.

When the Centers for Disease Control and Prevention introduced guidelines for opioid prescribing in 2016, doctors began treating pain patients differently. I had just had my second child and my post-partum body was inflamed. Only a year earlier, my doctor’s had found out that I have a rare allergy to steroids. The attempted treatment of a Remicade infusion allergy with a steroid medication sent me into anaphylaxis. With the code came allergy tests, and the arsenal of medications that I could once turn to for flares were condensed overnight. 

As a breastfeeding mother allergic to steroids, my options were limited. I was prescribed a pain management plan that involved hydrocodone – an opioid analgesic. After a year of being on Hydrocodone, I felt like the pain medication had cloaked my disease. At this point, I was no longer breastfeeding so I felt comfortable enough to selectively eliminate it from my regimen. After repeated unanswered attempts to requests that my physicians change my medication, I self-weaned. I quickly recognized that the system is not set-up to support patients who want to eliminate narcotics, nor is it set-up to support patients who are told to stop them. 

A couple of doctors were surprised. I made a choice to eliminate the medication due to societal stigma. Many of my fellow chronic disease warriors do not stop selectively, they are told overnight that they are no longer receiving a medication they’ve been on for many years. Luckily, I hadn’t been on a high enough dose to experience severe chemical withdrawal, but many are, and they suffer due to the lack of resources available to them to help them cope.

What came next was worse. I knew that by eliminating narcotics, I would experience some pain sensitivity and enhanced pain for a while. What I did not take into account was that I would actually feel the pain from my chronic disease at a level that would sometimes not be manageable, and that because I have allergies to so many medications, I would be advised by nurses by phone to visit the Emergency Room frequently.

 As a chronic disease patient, I have found that the worst place to visit is the Emergency Room (ER). I understand from the physician perspective that they frequently have drug-seeking patients and they have to be protective of protocol. However, I quickly understood why others in my support groups refused to visit the ER. 

On one visit to the ER, I was left outside of an ultrasound room for over an hour where the hospital staff had “forgotten about me”. My pain had intensified to such a degree that I could barely talk when they found me an hour later. I wanted nothing more than to go home. It was dehumanizing to be left in the hallway alone, half naked in a hospital gown in the imaging department. They apologized. But that wasn’t the only time I would end up being forgotten.  

Through my visits, I recognized quickly that the belief in managing pain shifted almost overnight to a philosophy of pushing pain acceptance. Most recently, I was diagnosed with Trigeminal Neuralgia. While learning to tolerate the pain as I have my many other conditions, I had a phone appointment. The doctor with whom I spoke with treated me like a drug-seeker when I asked her for anything that may help me bridge between the time I spoke with her and my neurologist. Because I had told her I was in pain, she instantly though I was asking for pain medication – I was asking for a solution. I had to literally ask her to please treat me with humanity because she spoke so condescendingly to me on the phone.

I am not alone. Hundreds of individuals in my support groups who use their medications as prescribed and under physician guidance experience being stigmatized, not having support, and being dehumanized. From our perspective, there is little being done to compensate for the regulations that are making it difficult for chronic disease patients who are losing long-term treatment options that have worked for them, or get physicians to take their pain seriously and actually treat their underlying diseases.

Discourse, empathy, understanding the patient-side of this crisis, creating a mutual map of coping with pain, management of the disease, and setting expectations is critical to resolution. Otherwise there will be patients experiencing more depression and hopelessness.

Mizgon Darby is the CEO of Art in Action, community advocate, and journalist.