Lately I’ve noticed a string of articles with titles like, “What Not to Say to a Woman Who is Expecting,” or “10 Things Not to Say to Someone with Cancer.” There’s many, many more with the same idea, all published in popular online outlets in the last few months.
Both articles left me considering the expectations I have for those around me when we discuss my headache (which, honestly, I don’t do a lot). What I’ve realized is that I don’t have expectations. No, that isn’t entirely true. It’s that I don’t want to hold any. I don’t want my friends to feel as though they need to study Huffington Post to learn how to appropriately have a conversation with me, lest they will offend me.
Here’s the thing: other people aren’t responsible for managing my sensitivities*.
Let’s take the Huffington Post article on migraines, for example. There’s no denying that saying to someone “Your pain is all in your head” or “You don’t look sick” are shitty statements.
But what about the first thing on the list: “I have headaches too.” People have said this to me many times, and what I assume is that they are trying to make a connection, trying to relate with my struggle. And while maybe they don’t know how painful my headache can be or how hard it is to have a headache now for 12+ years, I have to ask myself if it really matters. Is it really that important to distinguish two different levels of suffering?
If someone says something comparable to “I have headaches too,” and in interpreting that statement as minimizing my pain I feel the need to argue that the other person couldn’t possibly understand, I have to ask myself why I feel I need them to. Perhaps I need to give myself the level of compassion I am seeking from that other person. Or perhaps I need to find more people in my life who also hold that compassion for me. In the past, I’ve struggled in both areas. But over the years, I’ve found that when both are in place in my life (compassion from myself and from loved ones), it is far easier to avoid a “my-life-is-harder-than-yours” sentiment.
The “my-life-is-harder-than-yours” mindset is precisely the underlying basis of these types of articles. “My life is so challenging, I need you to read this article to be able to speak to me.” Or, “My life is so challenging, there are a whole list of things I demand you not say to me.”
There’s a debate on whether or not there is a hierarchy of suffering. In other words, if people’s pain can be ranked against each other’s in some sort of pecking order. There’s much to be said on this topic, but I argue, no, there can’t be a hierarchy because we all have certain conditions that bring us challenges. Some of us have kids. Some of us don’t. Some have medical conditions. Some have psychiatric. Some have difficult relationships…the list goes on and on. Without walking through those specific issues, it is impossible to understand the nuances and difficulties each one brings.
And even if it was at all legitimate to stack our pain against each other’s, we would have to face the reality there is always – always – someone who is facing more adversity than we are.
What I believe is that intentions can be felt. If I’m having a conversation with someone about my headaches, I believe I can tell the difference between an unhelpful comment that is made out of innocent ignorance, or one out of resentment, jealousy, or one-upmanship. Those intentions are what matters. And that’s where I hold my expectations. I seek out meaningful relationships only with people who make an attempt to connect with me on an empathetic level. When speaking to me from that heartfelt place, you don’t need a Today Show guide.
In the spirit of those caring relationships, if someone says something that touches on one of my sensitivities*, I try to tell them so. Not that I always do, or that it is easy, but I have found (the hard way) it is the best way of making my feelings known without requiring the other person to maintain constant hypervigilance for fear of offending me.
*Postscript: I realize the word “sensitive” as used twice above may not be the best here. Because it is so commonly paired with “overly,” there is a connotation that it is unjust or unfounded sensitivity. That isn’t what I mean to say here at all. What I do mean to say is that I (like everyone else) have a particular, nuanced way of interpreting the world based on my life experiences.
I have a confession: I’m harboring a particularly insidious habit. When speaking about my headache, I tend to abbreviate the term and refer to my body part most affected, my head.
“My head’s bad today,” I’ll tell my partner, as if my head were a teenager in need of a drastic parental intervention, like a year grounded in its room or electronic privileges forever revoked.
Ummm…no. My head isn’t the offender; it is the entity being violated.
Let’s back up.
When I lost my career in the Air Force – as well as my dream of flying, the ability to manipulate numbers in my mind with ease, and any hope of enjoying a quiet moment without this pulsing in my temples – I hated my body for breaking. Breaking. That’s what I called it. In fact, that’s how the cadets at the Air Force Academy trained me to think of it. If a malady prevented a cadet from performing, it was clearly a reflection of a personal weakness.
I didn’t want to consider myself weak, so it was my body. Not me. My body was the one who yielded to the infection in my nervous system. That mindset initiated a multi-year war between me and it, my own tissue and nerves and blood.
Many people with chronic pain and illness have the same experience: they split their minds away from their physical presence and begin to think of it as a separate entity. With the disassociation comes anger at their bodies – rather than empathy – and hostile resentment.
That severance and bitterness is precisely what I express when I tattle on my head for “being bad.” Wouldn’t it be more kind if I said, “My head is struggling today.” Or, an even more embodied, “I’m struggling today.”
It’s a subtle but meaningful difference. I can’t help but think that the way I use language, particularly over the course of a decade plus of chronic pain, impacts how I think of my condition.
So this week, I’m challenging myself to be mindful of the ways I communicate about my headache.
Recently someone asked me what advice I would give to another person with chronic pain who hoped to become physically active. After reflecting on the question a bit, I’ve come up with a few suggestions that might be helpful. (With the disclaimer that I’m not a physician or a physical trainer, just a fellow chronic pain sufferer.)
Challenge your belief system.
I remember when I was twenty-one telling a friend that I would never be able to stop taking narcotics as long as I had a headache. How wrong I was. In fact, I threw out my shoebox full of prescriptions by the end of that month. Then I believed I would never be able to go for a run again. Wrong again. I believed I would never work full-time. And again I proved that false.
The truth is that of course we have limits. Every human does. I’m not denying that those of us with chronic conditions often have more restrictions than those who don’t, but the trick is to uncover which of our limits are concrete versus those that can ultimately be overcome.
Try this: every time you notice yourself saying or thinking, “I can’t _____,” challenge the assumption that you just made, with the assumption that gains towards that goal might be slow. If your “I can’t” is running a marathon, start by daring yourself to run a mile. You might be surprised.
Discover what you love.
If you’ve ever met me, you know I love mountains. For me, the motivation to climb and adventure in them is the greatest intrinsic pleasure possible. I also can’t say no to the prospect of a long run. But like many of my friends you might think I’m crazy. If that’s you, perhaps try one of the other countless ways of getting up off the couch: yoga, Zumba, weight lifting, cardio machines, swimming, team sports, rock climbing, adventure runs, even something as simple as walking around a nearby park, perhaps even with a latte in hand.
Find what works for you and do it.
Try this: If you don’t have friends who can invite you along to their activities, Meetup.com is a fantastic way of connecting with groups of people who can initiate you into their hobbies. You might also discover great sites depending on the particular activity in which you are interested.
If you have chronic pain, there are going to be days that you don’t feel like moving. Especially at the end of a full day of putting up with my headache, what I really want to do most is curl on my couch with a blanket and mind-numbing TV (and I’ll admit it, all too often I do). Here’s where things get tricky. Some days, you need to make yourself get up anyway. It’s all too easy for one day off from running (or other activity) to turn into two or five days and then two weeks. The more you are inactive, the harder on your body both physically and mentally. I’ve found it is far easier to maintain momentum of training than overcome the lethargy I feel after resting too long. After all, if your condition is chronic like mine, you can’t wait until you are 100% better because you never will be.
Conversely, some days, you need to give yourself a break. Only you can decide where that line is.
Try this: If you have a work-out planned but are having a particularly rough day, make a bargain with yourself. Put on your work-out clothes, go the gym/trail/pool/park, and exercise for at least ten minutes. Start slowly and ease into it. If after those ten minutes the pain is still too much, stop.
Miss a week of work outs? A month? A year? Remind yourself that staying active while dealing with pain is no easy feat. Forgive yourself and begin again.
My partner and I have had a long-standing joke that whenever I dissolve into a fit of pouting silence (I won’t comment on how often this happens), that he tells me to “use my words” as if I was a three-year-old.
Often, I feel like telling my headache the same thing. When it gets grouchy and retaliates with increased pain, I wish it could tell me what it needs.
This year has found me in more pain than I’ve had in the last six. I’ve had far, far more “bad” days and the level of pain I consider a “good” day has dramatically increased. A squeezing throbbing wakes me up in the middle of the night, pounding in my temples makes work difficult, and sometimes the slightest noises or bright lights make me cranky. As much as I don’t want to admit it, my headache has limited my activities – work schedule, time with friends, even my runs – more than it has in a very long time.
I keep searching for a reason for the increased pain. Changes in my diet? My work-out schedule? Something to which I’m allergic? My peripheral nerve stimulator not functioning as it should? Is it the weather patterns? Stress? I wish I could scream at it, “Use your words!”
I’m doing my best to strike a balance between settling into this new pattern and accepting it as a new normal, while still search for a clue that might lead me in the direction of relief.