Normalizing Pain

I want to piece together a couple of items I read this week. The first is the following quotation, found via Shakesville, by Alasdair Thompson, the head of New Zealand’s Employers and Manufacturers Association.

“Look at who takes the most sick leave,” said Mr. Thompson. “Because you know, once a month they have sick problem.”– Alasdair Thompson, on why women are paid less than men.

Let’s ignore the erroneous assumption that all women menstruate monthly and that every person who menstruates presents as a woman. Let’s also ignore the fact that Mr. Thompson apparently provides no evidence regarding sick time or productivity to back up his assertion. They’re true and valid points, but they’re not quite what I want to talk about right now.

Because what I also read — and in fact requested to have written in some form — is a post at Beneath the Tinfoil Hat about endometriosis. Though it’s difficult to get exact stats because of difficulty with diagnosis, it’s estimated that endo affects 5-10% of people born with uteri and ovaries.

Whether you know it or not — whether they know it or not — you probably know somebody who has endometriosis. Everybody probably knows somebody — or somebodies — with endo.

Now, there is certainly not a one-to-one correlation here. That is, not everyone who has endo experiences menstrual pain, just like not everyone who has period pain has endometriosis. But as severe dysmenorrhea is the hallmark symptom of endo, there is considerable overlap.

And I take issue with Mr. Thompson’s dismissal of a potentially chronic, severe, and debilitating condition as “a sick problem” some women have once a month. Yes, it is a problem, but not because it’s costing corporations or countries money and productivity every month. It is a problem because it’s a condition that’s under-researched, under-diagnosed, under-treated, and under-accommodated — and it’s affecting people’s lives.

As I commented here (so you can find sources), on average there’s a 6 to 7 year delay between the onset of symptoms and reaching a diagnosis. That delay is even longer — 12 years on average — for people who present with symptoms prior to age 20. My personal diagnostic delay was 14 years — and that’s as someone who’s been fortunate enough to have health insurance and provider access nearly the entire time.

Why the delay?

There are a lot of reasons, certainly, but the normalization of bad menstrual pain is one of them. The idea that menstruation is a “sick problem” for most people who menstruate, that it’s “the curse of Eve” or “just part of being a woman” can lead people to internalize the idea that dysmenorrhea — no matter the level — is normal and to be expected. (And yes, I’d wager that some levels of pain are normal but that debilitating levels of pain are generally not.)

For people who experience pain personally, they may feel pressure to “suck it up and deal” or to blame themselves as just not being strong enough when they seem to be having more trouble than most. I was pretty physically active growing up, and a lot of my coaches, instructors, and trainers subscribed to the “no pain, no gain” philosophy. Nobody ever let me out of gym class or practice because of pain, at least not without a cutting remark. “You know, some of us just take Midol and move on with our lives.”

For those who respond to people in pain — particularly for health care providers — this internalization can sometimes mean dismissing or minimizing a patient’s self-reported pain. And when providers don’t respond sufficiently and sympathetically to patient symptoms, diagnoses get delayed, sometimes for years. But the patient’s life has to continue within that.

Sometimes — not always — that leads to people with endo (or suspected endo or other chronic pain) taking sick time off of work. That’s something that should be examined much more than it is now, yes. But it shouldn’t come from a place of, That’s why you don’t get paid as much (why your work isn’t worth as much), sorry. Instead, it should come from a place of providing accessible and understanding health care — not to mention more advancements in endo treatment and management — to help people not be in so much pain.

Microwave heating pad tied at lower back.

It is nice when I don’t need to be plugged into the wall.

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8 comments on “Normalizing Pain
  1. Quercki says:

    It’s very hard to know what “normal” is. How much pain is “normal?” How much bleeding is “normal?” What is the range beyond which one should seek medical attention?

    I went to a specialist for a broken bone once and he prescribed codeine for my menstrual cramps because they hurt worse at the time.

    • Tori says:

      Not only is it sometimes difficult for individuals to determine what’s normal, but sometimes health care providers — during the course of routine visits like check-ups or wellness exams — don’t necessarily ask questions in a way that gets at meaningful answers. I’ve had a number of providers ask me whether my pain and bleeding was “normal” or “normal for me.” At times in my life where I either didn’t know menstruation could be any other way or where I was sure my job was to “suck it up and deal,” I said yes to those types of questions.

      Regardless of normality, pain that causes passing out or throwing up is not healthy. Menstrual flow that would overflow a 2-liter soda bottle and that causes anemia is not healthy.

      Once I went to a specialist (for the pain and bleeding my GP at the time was “probably just normal”) who had me fill out a really helpful questionnaire. It asked how often (never-rarely-sometimes-often) various life events (going to work, social plans, running errands) were negatively impacted by menstrual issues, as well as how often I experienced specific symptoms (vomiting, fatigue, migraine, etc.). When we went through and discussed my responses, I think it was much easier for the doctor to get an accurate picture of what’s been happening with me.

      On a practical level, it seems like encouraging providers — including primary care and well care providers — to transition to that type of survey (as part of a new patient appointment) rather than asking about a vague and inconsistent concept of “normal” would not be a huge or burdensome change. In terms of impact, though, being able to talk about menstruation in specific, concrete terms might be huge in helping identify folks whose experience with is negatively impacting their health.

  2. Quercki says:

    Also, with this theme the bolding in your last line doesn’t show up well. I only know it’s there because it showed up fine in the e-mail subscription.

  3. Megan says:

    Thanks for writing this! I completely agree with you. The answer to painful menstruation is not to condemn those who suffer or even to be complacent and accept it, but to find a better way.

    The checklist your doctor used with you sounds great. Is this checklist similar to the one you used?

    http://endojourney.wordpress.com/2009/05/02/do-you-have-endo-heres-a-checklist/

    • Tori says:

      It was sort of similar, yes.

      The one I saw was more menstruation-cycle-specific, so while period-related questions and other cycle-related questions (e.g., experiencing GI issues cyclically) were on there, items like allergies and other autoimmune diseases were not.

      Additionally, the questionnaire I saw asked a lot of “how often” questions where patients would answer with a rating of always-often-sometimes-rarely-never. (At least I think it was “always” after “often.” It might have been something like “nearly always” or “very often,” though.) So as a sort of on-point example, it would say something like, “How often do you miss work or school due to menstrual pain?” Or, “How often do you schedule social events around your period?”

  4. Alex says:

    The way some doctors treat gynecological health infuriates me. I can’t imagine how frustrating it would be for someone with endo to get brushed off time and time again and told to “suck it up”. I have kind of the opposite problem in that I will often go months between periods and my doctors will tell me that I’m “lucky” and that “it’s just the way my body works”. It wasn’t until I went a year without that my doctor finally sent me to a specialist (despite me asking him five or six times prior).

    I can’t believe that a person at the head of the employers and manufacturers assoc. of an entire country would be so incredibly misogynistic to blame the wage gap on menstruation. Well, I guess I can believe it.

    I’m really sorry that on top of such horrible pain you have to deal with such asshats, Tori!

  5. […] my first period during my freshman year of high school. That pretty well coincides with the average 12 year diagnostic delay for people who first develop endometriosis symptoms while in their […]

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