Advocating for Your Chronic Pain Illness

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Last Thursday, I was not in a good place. I felt utterly mortified, wavering between defeat and anger. I knew that I needed to find another primary care provider, but the way my APRN said “If you see another doctor or get another prescription, I’ll get another letter and I won’t prescribe the Tramadol anymore” made me feel like if I transferred to another practice, I’d still just end up looking bad. I hadn’t actually done anything wrong, but I felt like I had, and I felt like I didn’t have any other choice.

Her words kept replaying in my head: “I’ll get another letter,” as if she was trying to threaten me. Had she really been concerned about my being dependent on painkillers, she would have asked me questions about my use, trying to get to the bottom of her concerns and helping her patient. But healthcare practitioners are not trained in substance abuse, save for a small segment. Nor are they trained in pain management. So, when faced with chronic pain patients like me or patients who are struggling with substance abuse, they don’t know what to do with us. And when they’re prejudiced by ageism, sexism, and ableism like my APRN—who made up her mind about me the very moment she saw my youthful, feminine face—they can’t be bothered at all.

And hey, maybe she really does mean well, but I have a hard time believing it when she consistently dismisses all of my concerns during our appointments, yet is attentive, involved, and jumps into action whenever she sees my husband. I’ve sat in on his appointments. I’ve seen the differences in treatment with my own eyes. The other day, while checking out, the elderly woman behind me praised the same APRN who’d just all but flat out accused me of lying. At this point, I can only conclude that she treats me the way she does because of how I look: like an able-bodied teen girl.

So yes, I call it like I see it: ageism, sexism, and ableism. And I’m so sick of it, I could breathe fire.

When my rheumatologist told me, during our first appointment, that I can’t possibly have an autoimmune disease and that I should be grateful it’s “only” Fibromyalgia, I was hurt and furious. I walked out of the office barely holding back tears, and spent the morning intermittently crying and smoking cigarettes. Then, the next morning with my best friend by my side, I called the office to complain. I ended up having a very productive phone conversation with him, and truly felt that he wasn’t bullshitting me. He’d realized he’d been wrong to judge me so quickly, and was willing to help me get my autoimmune disease figured out and under control.

I didn’t feel as if I could have such a productive conversation with my APRN. She has been dismissive of me since my first appointment with her, and even when I repeat my questions or point out facts, she completely ignores me. Whereas, with my rheumatologist, even when he disagreed that I have an autoimmune disease, he was still willing to listen, to take the time to answer my questions. I’ve never gotten that impression from my APRN.

Besides, I needed to state facts and lay things out, which would take longer than a five-minute conversation with the front end staff. They’re very busy, and likely wouldn’t have time to sit on the phone with me while I rattle off dates and details, nor could I be sure that the message would be relayed properly. I also felt super anxious, and wasn’t sure that I could speak without getting upset all over again.

I felt stuck. Even if I transferred to another doctor in the same health network, I would just look like the drug shopping liar she accused me of being. I wasn’t sure that the next doctor would be willing to refill my prescription and, even though at this point the Plaquenil is starting to work, I do still need pain relief. For my own peace of mind, I also need to know that, should the pain get bad again, I can get the medicine I need in order to get through my days and nights.

“I’ll get another letter,” she’d told me. While venting to Sandy, it dawned on me: she would get another letter, because I was going to send one to her.

Even though I wrote it in the security of my own home, I felt my anxiety mounting with each word. As patients, we’re conditioned to go with whatever the doctor tells us because they have the medical degree, not us. As chronic pain patients, we’re even more inclined to roll with it because we’re grateful to be treated at all—especially women, who are often stigmatized as being dramatic or drug-seeking. Autoimmune diseases are documented as being difficult to diagnose and treat; what works for one patient often won’t work for another with the exact same condition, because every person’s immune system is different. When you’re fighting an autoimmune disease, you’re fighting your own body, a complex and adaptive machine that scientists and doctors still don’t completely understand. So, when you’re not even very familiar with your own disease, it’s absolutely daunting to stand up to a healthcare practitioner and say “You’re wrong”—even when they are very clearly wrong, as my APRN was.

In my three-page letter, I stated dates that I’d been seen along with the unprofessional things that she’s said to me. I explained that I had come to her first, that because she’d brushed me off, I’d had no choice but to go to the ER when it hadn’t improved a week later. I ended my letter invoking my right as a patient to see the office MD from here on out.

After I put my letter in the mailbox, my anxiety only increased and I kept questioning myself, telling myself that I’d made a mistake, that I should just rip it up and deal with things the way they were. I always feel bad for standing up for myself. Maybe, if I’d just outright said to her “It’s not okay for you to joke about my age and condition” from the very beginning, or “I would like to try Flexeril” when she brushed off my Advil questions, it wouldn’t have come to me laying it all out in a three-page letter.

Women are conditioned to believe that if we speak up for ourselves, we’re inconveniencing someone. We’re accused of complaining, of being a bitch. But I had to advocate for myself and my healthcare, because if I don’t, no one else will.

So, I mailed out my letter. Despite my damned phone anxiety, I plan on calling in a few days to follow up and make sure that they got it. Then I’ll make sure my next appointment is with the MD who replaced my retired doctor, and hopefully s/he will be much more attentive, compassionate, and knowledgeable. I’ve seen dozens of doctors over the last decade, and so few of them are. It’s a damned shame, because it impedes healthcare and also ruins patients’ faith in doctors. I know it sure as hell has killed mine.

I’m getting better at advocating for myself, though. Even if I’m too shocked to defend myself in person, I can always call later when my anxiety calms, or write a letter when my anger fades. Speaking of, I also wrote a letter of complaint to the hospital about the way the ER attending and some of the staff treated me. In the past year, since getting my voice back, I’ve become less afraid to speak up for myself and others. It’s never easy, but it’s always worth it.

I am worth it.

Always a Liar

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At the end of December, as my joint pain started to improve, I started having debilitating neck and lower back pain. I knew it wasn’t my UCTD, but still tried to let the Prednisone and Tramadol take care of it. They didn’t touch it. I couldn’t sleep or work, so I mentioned it to the APRN I see at my primary doctor’s office during my followup with her for my Tramadol refill.

I told her that I’d been taking Advil for it, which helped a little, but I wasn’t sure how much I could safely take. Her response? “Just don’t take too much.”

“Yes, but… how much is too much?”

“Just don’t take too much. The Prednisone will help it,” she insisted.

“I’ve been on Prednisone for a month. This is a new issue.”

“The Prednisone will help it.”

A week later, my joint pain continued to improve while my neck and lower back continued to be debilitatingly painful. Since the APRN had refused to offer me any real advice or treatment, and I wouldn’t be seeing my rheumatologist for another two weeks, I tried ice, heat, more Advil, rest. It didn’t improve. On a Wednesday night, the pain got so bad I couldn’t even focus on the TV show that I was trying to watch.

I decided to go to the emergency room—which apparently was a mistake.

This morning, during my followup with my APRN for my monthly Tramadol refill, she asked if I’m seeing any other doctors. Confused, I said, “Just my rheumatologist,” which she should’ve already known.

“Are you getting any other prescriptions?” she asked.

Still very confused, I replied with my usual list: Prednisone, Plaquenil and, recently, Flexeril from my rheumatologist (I’ll get to that in a moment).

“You got a narcotic,” she said.

I’d honestly forgotten about the ER visit. During my followup with my rheumatologist, I told him how the APRN had brushed me off, how the ER had flat out asked me what I wanted them to do for me, and asked him about Flexeril. My rheumatologist wrote me a prescription for it and, within less than two weeks, my neck and lower back were back to normal.

I told the APRN that yes, I’d been to the ER, and yes, they’d prescribed me Vicodin, which I didn’t want.

“Then why did you fill it?” she asked.

“I’m sorry,” I said, “but have I done something wrong? If you remember, I came in here to see you and asked you about my neck and back, and you just told me not to take too much Advil. So yes, I went to the ER.”

I did what I had to do so that I could get some relief.

As usual, she brushed me off, speaking as if I hadn’t said anything. She again started lecturing me, saying that I can’t take Tramadol and Vicodin together.

“I didn’t,” I said, “and the ER doctor knew my current medications and said that it was okay.” I also told her that my rheumatologist prescribed me Flexeril and that worked, that it was all I’d wanted all along.

She then lectured me about dependence on Tramadol, how I can’t go to the ER, and can’t get anymore prescriptions, or she won’t refill Tramadol for me anymore.

“I’ve been taking Tramadol for my arthritis for years,” I told her, “and I’ve never had any trouble with it, nor do I have any history of substance abuse.”

Ignoring that, she started talking to me about Tylenol and Advil. Even though she could have looked in my chart to see all of the various medicines and treatments I’ve tried over the past decade, I explained to her again that OTC pain relievers and NSAIDs don’t help. She then started talking about a new NSAID with an antacid, and how my insurance doesn’t cover it, but next time I’m going to try it.

She also interrogated me about why I waited so long to come in for a refill. I called a week and a half ago for an appointment and today was the earliest they could give me. How is that my fault?

It seemed like she wants to take me off Tramadol, which has long been a happy medium for me. It doesn’t completely take away my joint pain, but it helps enough so that I can function (unless I’m in a flareup). I’ve tried multiple OTC and prescription NSAIDs over the years, all of which she could see in my chart. None of them have worked, which is why I started taking Tramadol.

I was really confused and once again felt like she wasn’t listening to me. Since I haven’t slept these past couple of nights, I just didn’t have it in me to explain once again everything she already knows, things that we’ve already discussed multiple times.

On my way out, I went the wrong way. I’ve been in so many doctors’ offices lately, my exhausted pea brain is directionally challenged. She condescendingly pointed me in the right direction, as if I wasn’t already mortified enough. I stopped at the front desk to make my followup appointment for next month, rather than calling in to schedule it later. Before I left, the receptionist stopped me and asked me to sign a paper.

Again confused, I sat down and read through the three-page document—an agreement about narcotics, with a long list of restrictions. I can’t even fill my prescription at a different pharmacy. What happens if we were to move, or if I wanted to fill it at Stop & Shop while I get groceries?

I know all of this is coming from the new regulations—and of course lawmakers didn’t consider chronic illness patients—but her attitude toward me has always been dismissive. Today I just felt completely dehumanized; she treated me like a liar, like a criminal.

Yet every time my husband has seen her and expressed his health issues and concerns, she’s been attentive and quick to work out a treatment plan for him.

Every

single

time.

I’m glad Mike’s finally getting things taken care of, but previously he hadn’t been to a doctor in over 15 years. I have a long history of having an autoimmune disease and documentation of seeing specialists and trying different treatments. When I see her, my concerns are dismissed; she flat out told me that I have “too much going on,” so she doesn’t “want to touch me.” Yet Mike has even more health issues than I do, and she told him that she would take care of everything.

I’m tired of being treated like a liar and a criminal. I’m tired of being dehumanized, having my pain and concerns dismissed over and over. I’m tired of sexism, ableism, and ageism in the healthcare field. I’m tired of playing this game.

I don’t have it in me anymore. I really, really don’t.

The worst part is, I can’t even just switch doctors, try to find someone who will listen to me and actually read my chart. The APRN told me that she got a letter saying that I’d filled a prescription for Vicodin, and told me that if I see any other doctors or get any other prescriptions, she’ll get another letter.

Which means that, if I change doctors, it’ll just look bad on my end; I’ll just look like I actually am drug-seeking.

No matter what I do, no matter how pro-active I am in my health, I’ll always just be a liar.