I’m [Not] Fine: Distress Tolerance as a Double-Edged Sword

So, friends, it’s been a while. And if you’re wondering if I still have cancer…I do. I feel somewhat silly writing updates when, practically speaking, there’s nothing much for me to update you on. I also feel worried that I may “bore” you by continuing to have–and continuing to talk about–this same disease over and over. Cancer is just a fact of my life now, both terrifying and quotidian (and terrifying because quotidian). And, I guess, my cancer is also a fact of yours. And so I worry that you’ll lose interest or become habituated to it or maybe even just forget that it’s a Big Deal–to me, to you, to the world–and that I exist every day in quite a scary position. Or that–particularly since I’ve been keeping up do assiduously with my normal life (about which more in a moment)–you’ll wonder why I’ve chosen to confront you with my illness yet again. At a certain point doesn’t continuing to talk about it become…rude?

I’ve now had five weeks of in treatment during only four of which I’ve received chemo. (You get “off” weeks so that there’s some built-in recovery time so that, for example, I’ll get chemo again on Thursday and then I’ll get a week off next week.) Five weeks and, to my great surprise, I’m still not looking or behaving much like a cancer patient.

Or am I?! What IS a cancer patient supposed to look or behave like anyway?!

This question relates to the post I wrote earlier about the invisible illness and how I have (still) the privilege of not looking like I have stage 4 cancer - a disease that is extensive and serious and which is maybe still growing even as I type this. I wrote before about how the invisibility of my illness so far is a largely positive thing that allows me to “pass” as a regular person. I’m experiencing a bit more of the other side of that now, though, which is that as my treatment progresses with relatively mild symptoms and without hallmarks of illness (I STILL have so much hair that I actually had to get it CUT last week!) the severity of my disease becomes, I think, less real to the people around me. It’s still quite real to me. Not only do I literally never forget about it, but it’s my physical body that’s experiencing symptoms, which are accurately characterized as “mild” but which are absolutely, definitely unpleasant. For the record, I have more or less constant acid reflux, which I manage with over-the-counter medicine; low-grade nausea that I have drugs for; occasional diarrhea that also just takes over-the-counter stuff; neuropathy–nerve death–manifesting as pins-and-needles in my fingers and toes; joint/muscle pain in my shoulder withs some spasms; and bleeding and bruising easily which has led to some bloody noses when it’s dry. (Far worse, I will add, are the psychological effects of wondering constantly whether chemo is working; if it is working how well; if it isn’t working how much the cancer has spread; whether I will recover at all and, if so, for how long; and all the myriad other questions that can send me deep into an anxiety spiral.)

So I guess that’s…not nothing. And yet I barely ever mention it. In part, it’s because I’m aware how of how incredibly lucky I am to have such relatively minor symptoms. I know it’s worse for most people, that chemo renders many people miserably sick and basically non-functional. I also don’t bring them up because I hate mentioning things to people when they can’t do anything about them, projecting, I suppose, my own dislike of feeling powerless to help those I care about. (I show love by trying to problem-solve, which is neither the best nor the worst approach.) Add to these reasons the fact that I’m very afraid of being perceived as “whining” or “complaining” (even when there is a very valid thing to complain about) AND of being perceived as “weak” if I can’t hack something this relatively mild and you can see why I choose simply not to discuss it.

But I think my decision not to talk very much about my symptoms has to do also with an ability I have that has betrayed me before and kept me from getting the support–emotional or practical–that I have needed in the past. That ability is my skill with distress tolerance. “Distress tolerance” is a term from DBT (Dialectical Behavioral Therapy) although I find it more broadly useful as a concept. Essentially, it is what it sounds like: the ability to withstand emotional or physical discomfort. It’s a quality that I have cultivated relentlessly over the years, both because I needed it to cope with the situations in which I found myself and because it was highly valued by others. It is a positive thing, in one way, since it affords the ability to make it through incredibly difficult situations intact. It can be a negative one too, though, particularly since “distress tolerance” can look to the untrained observer a lot like being unaffected, unruffled, “fine.” It functions far too effectively as camouflage.

One of my best friends, who was my housemate during my Oxford Master’s, said back then that you could always tell when certain people were on the edge of collapse because, when asked how they were, they would just say “I’m fine.” These weren’t just any people, though. They were people like us. Some people probably mean it quite sincerely when they say that they’re fine–they may even want you to stop asking if they say so! Those people would probably also tell you if something were wrong, might not think of themselves as being weak or disappointing in some way because of the simple fact of needing something from another person. I’m not one of those people, though, and neither was she. We’re the kind of people, instead, who will smile while bleeding internally, laugh through gritted teeth, keep up a good appearance no matter what. We’ll also trick you and distract you like professional confidence artists, weaving together strands of questions and compliments about your life until you’re unaccountably talking at great length. You may have asked about us, but after we say the magic word (“fine”) you’ll find that we are talking about you and only you. 

Very few people spot this trick, which is understandable since people, in general, love talking about themselves. This makes it also a very clever emotional trap for friends, family, and partners: if you don’t see through me, if you let me go through my song and dance, I feel like you don’t really see me at all and I can therefore justifiably push you away. The rare people who do see through this fiendishly clever trick are usually the ones who know how to do it themselves. They’re kindred spirits with whom the trickster process stalls, forcing me to have a real conversation about how I am past “fine.” I’m lucky that I now have a lot of these people in my life, partly because when I find them I cling on for dear life, partly because I’ve worked hard on breaking this pattern to be able to have more of these real conversations. After all, is there anything more valuable than finding another person who you feel truly sees you?

So when I am tolerating my distress–whether it’s physical or emotional–I can at least be sure that there are some people in my life who will see me, and see through me. But they’re mostly not living where I live, which adds another layer of complexity. How will they see through me when they’re relying entirely on my own reports? The answer, of course, is that I have had to get better at being honest: at honestly assessing how I am and honestly telling people if it’s not “fine.” And it’s absolutely one of the hardest things I’ve had to do. But it will, I think, mean that I emerge from this experience with even better friendships and, perhaps, better coping mechanisms. Distress tolerance is all well and good, to an extent, but it shouldn’t be the main principle along which I organize my life. 

So that’s how I am, really. Both fine and not fine. Living my everyday life as well as I can, ignoring the symptoms I can’t eradicate, taking things a step at a time and hoping for all the best. But also consumed with grief and rage and fear, all of which sit untapped but just below the surface, easier to access even than the veins into which my port is plumbed. My reluctance to tap those feelings is because, more than acid reflux or shoulder spasms, they would make my life unlivable if I experienced them all the time. But perhaps it’s enough to share that they are there, even if you can’t see them, and that they are part of what makes me different from how I used to be–even if I still look the same. (Pictured: new haircut.)