Symptoms and Causes

By: Loolwa Khazzoom, Founder, Dancing with Pain

June 9th, 2008 • Patient AdvocacyPrint Print

A few years ago, my heater kept going off. I called a repairman to come and fix the problem. Little did I know, his idea of “fixing” the problem was removing the safety latch that automatically shuts off the heater when there is a buildup of emissions.

It was perhaps a year later that I inexplicably got headaches, felt dizzy, and kept seeming to be on the verge of fainting. During the two or three days this went on, I noticed that when I went outside, I felt fine within a short amount time, but when I returned home, I felt sick again. In addition, while indoors, I kept feeling drawn to stick my head out the window.

I was on the phone with someone while feeling an intense bout of this sickness. She suggested that I get my heater checked, and that in the meantime, I open all the windows in the house. It was the middle of winter, but I did as she suggested and felt better immediately.

I told my mom about what had happened. She felt especially concerned, because the daughter of a friend of her friend (still with me?) had just ended up in a coma from carbon monoxide poisoning, while the young woman’s boyfriend had died from it in the same incident.

Turned out I was also poisoned. When the new heater repairman came and checked my appliance, he informed me that the carbon monoxide emissions were so high, I was lucky to still be alive.

I had a lingering sickness for months. Among other things, I often gasped for air; I became easily exhausted; and I frequently felt on the verge of collapse.

Thanks to the foresight of my chiropractor, I was given oxygen treatment about a week into this condition. Immediately, my skin tone changed from an ashen hue back to a more healthy shade, and I was able to breathe more easily. Despite the fact that medical tests did not indicate any need for it, my doctor subsequently authorized oxygen therapy for me — based on my anecdotal evidence alone.

This therapy had the immediate effect of lessening my symptoms and the long-term effect of healing my sickness. Consider the implications of what happens when a doctor is willing to believe her patient and act on it, and conversely, what happens when a doctor isn’t.

Prior to that treatment, a day or two after my heater was fixed (for real this time), I was awoken early in the morning, by a sense that I was about to die. Something was horribly, horribly wrong. I called 911 and raced downstairs to get air.

Sitting outside was helpful. By the time the ambulance arrived, I was still dizzy, weak, and feeling totally out of it, but the imminent sense of collapse had faded away.

When the ambulance attendant asked what had happened, I explained that I’d been poisoned by carbon monoxide — as confirmed by my heater repairman and doctor, I told him — then listed my symptoms to date. “You’ve been feeling dizzy?” he asked, kneeling in front of me. “Yes,” I confirmed. In a contemplative tone full of wisdom and authority, he replied, “OK so you have an ear infection.”

What?! Dude didn’t even bother checking my ear. It was an enlightening moment, on a number of levels:

For starters, when I again mentioned that my doctor had confirmed my symptoms were in alignment with carbon monoxide poisoning, one of the attendants replied, “Oh, your doctor said it was carbon monoxide poisoning?” Only then were the attendants willing to believe it was a possibility that I’d been poisoned.

Their reaction highlighted how people outside of our bodies are socially positioned and as an upshot, deferred to, as the authorities on what we are experiencing. This dynamic not only undermines our physical, emotional, and mental intelligence and autonomy, but also in effect compromises our health and safety:

Our own testimony about what’s going on with us, and what we therefore need, is perceived as some combination of inadequate and irrelevant without the backing of a pre-determined authority. Meanwhile, this pre-determined authority is the gatekeeper for our treatment — socially (ie, how we are listened to) as well as medically.

If this authority fails to listen to us and/or respond to us appropriately, and if she otherwise hits up against her own limitations and fails to properly diagnose and prescribe a course of action for us, we’re screwed. Who, after all, are we to determine what we need?

Secondly, this experience was yet another lesson in how incompetent our social system, and by extension, our medical system, is in treating people who are weak or otherwise dependent. It has been my repeated experience, and the repeated experience of scores of other people with chronic illness, pain, or disability, that precisely at the moment we need the most compassion, respect, and support, we are treated in ways that are shaming, undermining, and intimidating.

What does this reality say about our culture, our value system, and the direction in which we are heading as a society?

Thirdly, this ambulance attendant took one piece of truth — that ear infections cause dizziness — and projected it all over my situation, without bothering to genuinely listen to me and, armed with the insight thus gleaned, explore with intelligence the various possibilities of what was happening and why.

Doctors behave like this constantly: They know that A commonly causes B. When we come in with B, they do not simply acknowledge that A is one possible cause to check out, but they assume we have A and prescribe a course of action that in fact may be completely irrelevant, if not damaging, to our actual condition. This behavior is medically and intellectually lazy, not to mention unethical, given the potentially devastating impact on our lives.

But it’s not just doctors who behave like this. When people have a certain piece of information about X, they often think they know everything there is to know about everyone who has any faint shade of X going on.

Now that there has been documented research showing that emotional unhappiness can lead to physical pain, for example, G-d help you if you tell someone you have physical pain. Never mind the fact that a house collapsed on you. Obviously you’re hurting because someone was mean to you in your childhood, and you’re unconsciously manifesting pain in your life.

This attitude…

  1. potentially obfuscates the authentic cause of pain
  2. as a result of 1, delays or prevents the healing process
  3. potentially blames people for their suffering
  4. as a result of 3, adds another layer of suffering and frustration
  5. undermines the accuracy and power of tools we have at our disposal, and therefore, potentially discourages use of them

Human beings are an incredibly diverse species. While we each may have certain characteristics in common with everyone else on the planet, there is a tremendous amount of variance within those similarities. To honor the power and potential of information that we acquire about the human brain and body, we must be honest and accurate about what we do and do not know about how that information manifests in each person.

We must be humble. We must always explore, ponder, learn, and revise our ideas about what is “fact.” There are a million different ways for each of us to get to the same point. Having information about how one of us got there, or even how a million of us got there, doesn’t mean we know it all.

In another post, I’ll give my Rx for the ultimate medical and social treatment of people in pain, given this perspective. Stay tuned.

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