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Why I Go 'Doctor Shopping' as Someone With a Chronic Illness

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If you do a quick search of the current news, you’re going to see a very interesting set of results when it comes to “doctor shopping.” You’ll see a mess about vaccines in California and an attempt to prevent anti-vaxers from finding more sympathetic doctors to medically exempt their children from vaccines. You’ll see a bunch of mumbo-jumbo talking about curbing the opioid epidemic and a really odd definition of “doctor shopping” that refers to finding doctors who will write you a prescription for a specific pain medication – sometimes an illegal one.

Let’s take a second to think about that last one… doctor shopping for a drug that may be illegal? Wouldn’t the best course of action be to address the doctors who are, you know, writing the illegal prescriptions? That would just make way too much sense. But instead, Congress wants to combat this in a manner that could stigmatize patients with chronic illness, whether or not we need opioid medications.

So what is doctor shopping to me? I’m a 21-year-old with a chronic condition that has left me disabled. And let me tell you, I don’t just get a new doctor here and there, I look at the medical system like the Mall of America and I go on a shopping spree. But viewing it this way certainly didn’t happen overnight, so let’s take a walk down memory lane.

I received my migraine diagnosis almost as a passing thing. Somewhere back when I lived in Illinois – late middle school, maybe freshman year of high school – my doctor confirmed the pain in my head was migraine.

Sophomore year of high school, my new pediatrician/family doctor decided the course of action for migraine was starting me on birth control – because he believed migraines were only a hormonal thing and that was the only explanation for an adolescent female experiencing head pain.

After a change of insurance, we sought out a new family doctor in the Charleston area. This new doctor took my migraine diagnosis as is. It wasn’t until I started complaining about severe insomnia that my health received more attention. This doctor told me I really ought to be getting more sleep. He offered no recommendations, just acknowledged that not sleeping for two months straight probably wasn’t good. He did decide to refer me to a neurologist to have my migraines better understood.

My first neurologist has proven to be my best neurologist. We immediately got me on a better track with a preventative medication, and discussed how long I should be trialing medication if it isn’t working. I’d spent years on a medication that did nothing and before him, no one batted an eye. He also gave me my first abortive treatment to use when I had a bad migraine attack.

We trialed options up until I left for Clemson University, and he offered me phone conferences at school for progress updates on new medications. We trialed over eight medications in this time period. Every time he saw me in person, he made a point to express that I needed to find more things in life I actually enjoyed, because apparently wasting my appointment time with wishy washy nonsense about a school I was transferring away from wasn’t positive enough, even though I was there for medical care.

I knew I had to begin doctor shopping.

I moved to Wisconsin to continue my education and in hopes that a new climate would serve my health well. I was wrong on all counts, and doctor shopping proved to be a strenuous process. In having to change my healthcare coverage region, I had to wait three months to even be seen by a primary care physician (PCP) to get a referral to a neurologist in the area. My PCP was lovely in the beginning and with my medical history, we didn’t go too much into my migraines, knowing I’d receive a referral for a doctor more equipped to handle my case.

Four months later I saw that neurologist. He took me off all my medications, started an entirely new care plan and refused to acknowledge when the new medications not only messed with my breathing, but messed with my mental health. He refused to listen to my questions on Botox and insisted I’d just have to go it without aid of other medications since he didn’t want me on my old care plan.

I fired him.

But my new referral to a top headache specialist would take an additional three months. That’s what can happen when you doctor shop and move in the same time frame. I had to go 10 months without anyone to consistently care for me or get refills for prescriptions. People living with chronic conditions often have multiple prescriptions, some for medications they take daily. To the average person, needing a prescription doesn’t sound like such a big deal.

Thankfully, my Charleston neurologist was an advocate and ally and worked to be in contact with my PCP when the first neurologist attempted to prevent me from getting refills on old prescriptions for the original care plan. Had I not had a doctor who understood my health history, I may have gone months without any medication.

Fast forward through seeing a great headache specialist and then moving back home and returning to my first neurologist, the doctor shopping was far from over. I knew I had to be vocal about my needs as a patient – my PCP in Wisconsin had told me during my last visit that I didn’t need to be on disability and was acting foolish. What I supposedly needed was an anxiety or depression medication, because migraine is bound to add a bit of stress to my life.

My neurologist – upon explaining the process I was going through to apply for disability – quite blatantly told me I was too pretty and happy to be on disability and spend the rest of my life relying on food stamps living in some trailer park. He didn’t mean it in a “I won’t help you get your disability approved” way, but more of a “this is a tragedy and shouldn’t be happening to you” way. Either way, his comments were rude and I requested a new referral to a headache specialist who specialized in migraine surgeries.

She told me I was a textbook migraine patient, and that she’d send her info back to my neurologist and he should continue treating me, particularly with Botox. She was ill-equipped and had no new information for me.

Botox failed. It’s done permanent damage to my neck. And I suddenly had new symptoms. New questions of the origins of my diagnosis. I brought up the theory of my knee injury in high school potentially causing damage that worsened my migraines – or served as the event that pushed the beast over the edge — to my new PCP. I was sent on a runaround that I’m still on regarding a potential minor scoliosis diagnosis unrelated to migraine.

The same doctor took weeks to even order the test, and blatantly said I needed to stop thinking so much and that all migraines are treated the same, therefore I should try the newest drug on the market. (Not a fact backed by research.)

Within two weeks, I was back in her office because a high fever and severe abdominal pain similar to my inflamed colon from a few years back was preventing me from sleeping. The physician’s assistant ignored my medical history, told me I was too young and too thin to have any gallbladder or liver problems, and that I needed to be honest about my binging and purging habits because that was the only relevant explanation.

I went to urgent care a few days later and my inflamed colon suspicions were confirmed.

I fired that PCP and her entire staff because they were all awful.

Eventually I saw a GI specialist, who made it clear I had no business being on disability for migraine. She had nothing to add as to why I had severe stomach pain. As far as she was concerned, I should be perfectly fine. She prescribed me pain medicine I had a severe reaction to. After the reaction, it took over a week for a courtesy call suggesting I stop the medication. Needless to say, I haven’t been back nor brought up the issue again.

And so, I doctor shop.

I doctor shop so I can find a doctor who has encountered my situation and can offer me a practical diagnosis and treatment plan.

I doctor shop because no one should have to rely on a doctor who doesn’t believe in the severity of their most prominent ailment.

I doctor shop because my smile and happiness shouldn’t determine the quality of care I receive.

I doctor shop because if I reference a medical journal or scientific study, I want my doctor to be as aware of it as I am – because as a chronic illness/chronic pain patient I do in fact know how to Google and can better piece my symptoms and conditions together than most doctors.

I doctor shop because I am worthy of respect.

I doctor shop because doctors are paid to serve me, and I determine if the service I receive is of good enough quality.

I doctor shop in hopes I will find the correct combination of people for my care team, who will have my overall health and my future in mind.

I have never doctor shopped because of pills. And the insinuation and continued push against opioids is making the lives of those of us who need more complex medical care absolute hell.

Getty image by noiponpan.

Originally published: July 16, 2019
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