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What a 'Routine Depression Survey' Meant as Someone Living With Chronic Pain

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Last week, I had my monthly check in appointment with my doctor, as part of my long-term chronic pain management plan. Once in an exam room, the nurse handed me what she told me was a “routine health survey.” The first side was pretty innocuous, a few questions about if I was a smoker, drinker, had any accidents this year and so on. There were several questions I assume were to gauge how responsible I am with my prescription pain medications, the answer being very responsible, but I had kind of expected that given all of the turmoil in the news as of late regarding what the misinformed believe to be an opiate crisis of epic proportions. The back of the survey was complete with questions I wasn’t expecting, but nonetheless had been preparing for over the last few years.

The back side was what read like an innocent, well-meaning survey, but my breath shortened and my defenses rose instantly upon reading the title because I know the questions aren’t always so innocent.

This particular paperwork gem was called a “depression survey.”

I want to say this right, because depression is a condition that should be taken as seriously as my own condition. People dealing with it need compassion and assistance from doctors, friends, family and our community as a whole. The general public needs to have more awareness about the condition and learn not to dismiss it or joke about it. If someone was struggling with depression, this type of survey might be a great way to open up a discussion with their doctor in a safe environment.

That being said, however, it has been my personal experience that “depression” can also be a label to be wildly misused.

I have debilitating full body complex regional pain syndrome (CRPS). I require the use of a mobility service dog full time, and I rely heavily on support from friends to take care of myself, drive places and more. CRPS, if you aren’t familiar, is a dreadful condition that makes it feel like I’m on fire, all my bones are breaking, I’m being shocked and a whole host of other terrible but accurate pain descriptions, all at the same time. Every hour of every day of every year for the past seven years, I have been in agonizing pain. CRPS has coined the nickname “suicide disease” because the pain is so bad that death can feel like the only choice.

I have stared down depression once with CRPS. I considered suicide once. But something deep inside made me stop, made me rise back up, and I have never experienced either since then. For me, it was very fleeting and during a particularly rough semester at college. Since then, I’ve learned better ways to manage my pain and my life, I’ve accepted my canine assistance partner who is fabulous, every day I actively work towards getting stronger, and I’ve accepted my pain as the new normal. Depression and suicidal thoughts don’t have a place in my life anymore, and haven’t for years.

A year ago, I began seeing a local therapist to have someone to talk to about this life, so that I wouldn’t always be vomiting my chronic life stress all over my fiancé. It’s been a great decision. We’re working on brushing off ignorant comments, implementing mindfulness skills in everyday life, and being more confident with my disabled identity. A few weeks in, I remember talking about days where I need to let my brain have a day off from normalizing pain, and I felt at the time, that I needed to vehemently tell him, “I promise you, though, I am not depressed. Not at all. It’s not the same as depression.” He calmly stated that he agreed with me. He said it was rare for a chronic pain patient to not be depressed, but said I was nowhere near being depressed.

It’s affirming to have my therapist confirm what we already knew — that I’m not dealing with depression on top of pain. But to me, its especially important because in the past treatment of my pain, that has been the only thing doctors cared about.

Doctor after doctor. I tried to tell them about the pain. I described it, I pointed to where it hurt, I did their tests and I listened to every single one of them either tell me I was “crazy,” or ask, “Are you sure you’re not just depressed?” My dad, someone who should’ve had my back, dragged me to the family doctor where the two of them teamed up against me. They questioned the realness of the pain, and presented me with a preposterous conclusion regarding “what was really going on.” They believed, wholeheartedly, that my pain wasn’t anything physically wrong with me, but rather a manifestation of overwhelming depression and anger resulting from having a rough childhood because my mom had died. They tried to prescribe antidepressants, which I refused. They tried to pressure me to admit I had depression, that I was lying about the pain. I stormed out, never went back to that doctor, developed a mistrust of doctors and learned to be wary of their questions.

Fast-forward a few years, and I began seeing a pain specialist. He diagnosed me with CRPS. I expected that someone who specialized in pain would be compassionate, understanding and genuine. The first few appointments were OK, then I began noticing a pattern. At the end of each appointment, he would ask something like, “Still doing OK? No signs of depression?” I’d always respond with no, that life was rough and the pain terrible, but no depression. Then the tone changed. Suddenly, every appointment ended with, “Are you sure you’re not suicidal yet?” Each time, I said no. And each time, he would press me for a yes. I eventually left that doctor as well, once it became clear that he cared more about getting a confession of being suicidal than actually treating my pain.

So. When I sat in my current doctor’s office, a woman I do trust, and stared down at this depression survey, I tensed. I took a few minutes and looked through the questions. I read each one thoroughly, and the more I read, the more I got the distinct impression that it was a snare. A fishing net sweeping across the water to catch anyone who responded with answers that the hospital believes to be warning flags for depression, with no room for discussion. This worried me, because while the first few were classic hallmarks, more of them also fit with numerous other conditions that don’t necessarily lead back to depression. A few on the survey were…

“Trouble falling asleep, staying asleep.”

“Feeling tired or having little energy.”

“Trouble concentrating on things such as reading.”

“Feeling bad about yourself…  feeling that you have let down your family.”

“Moving so slowly that other people notice.”

What comes to my mind is that these questions in particular also apply to people with CRPS, chronic pain syndrome, multiple sclerosis (MS), fibromyalgia, chronic fatigue syndrome (CFS), Ehlers-Danlos syndrome (EDS), brain fog and so much more. Living with any one of these conditions isn’t a guarantee that you have depression, and yet there is no way to accurately quantify your answers to this survey. If you were a new patient, your doctor was a jerk or you temporarily had a different doctor, answering yes to any one of these questions might result in the doctor stamping your file with depression, ignoring your actual condition and sending you down a rabbit hole of incorrect judgments later on.

As someone with chronic pain who takes opiates, I keep a close eye on the news and latest regulations. It’s unfortunate, but lately, it seems that one of the red flags that interfere with the ability to fill valid and necessary opiate scripts for chronic pain is if the word depression pops up in your chart anywhere. Pharmacists see that word, and ignore the more pertinent words. Those who don’t understand think you might not be responsible with your meds if you carry the label and/or diagnosis of being depressed, and feel it is their civic duty to protect you from yourself. This belief is ridiculous and complicated. It hurts many, including the people with both chronic pain and depression, who need their pain medications in order to keep functioning in their daily lives. I know its even worse for the people who genuinely are depressed. Doctors using depression as a label, instead of an accurate diagnosis, makes it ten times harder for depression as a whole to be taken with more regard and credibility. Fear of the label creates people, like me, who feel the need to vehemently shout to the world that they are far from having depression and people who never speak up about their legitimate depression for fear that they’ll be seen as weak, that they’ll be brushed off by the medical profession, or that they’ll carry the label but no one will accept the diagnosis.

I agree that the way we view depression and the way it’s handled by the media needs to change. I agree that awareness about the condition is key. But I am wary of some of the tactics that the medical community has for determining who is depressed and who is not. I worry for the people who need help and are afraid to speak up. I worry for the people who don’t have depression, and view any mention of it as being a trap that might throw a wrench in the management of their own condition. I hope for the day when depression is a condition, not a label.

For now, I do what I feel I have to in order to keep doctors focused on the letters C-R-P-S, and hope they won’t get distracted by anything else.

I didn’t answer any of the questions on the back of that survey.

I picked up my pen, found a blank space in the corner, and wrote, “I am not depressed. My therapist can verify this. I am unwilling to answer any of these questions because many apply directly to life with chronic pain, and I don’t want there to be any confusion.”

Speak up for your condition. Speak out against presumptuous assumptions and labels. All of us deserve for our conditions to be diagnoses, not labels.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741741.

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Getty Images photo via SeventyFour

Originally published: January 17, 2018
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