Catastrophizing is an interesting phenomenon when you are a statistician. It’s ingrained in me to work out the odds, even for the things I fear the most. I am the girl who corrects her therapist that, “No, I don’t actually think X, Y or Z is going to happen. I objectively assign only about a 15% probability of X happening in the next three months; however, I fear X enough that even those odds trigger nightmares.” I am either terrible at Cognitive Behavioral Therapy or amazing at it, depending on how you view it.
Sometimes the odds are somewhat reassuring, and sometimes times they aren’t. Either way, never tell me those odds unless you can back them up with peer-reviewed citations. I work in public health, and epidemiology is not often kind. I consider myself an advocate because I see in the odds how rough it is for anyone different from population expectations. I see the odds for those who aren’t neurotypical, for those who live in poverty, for those of color. I see the odds, and I both fear and advocate more because I see them. After the first few therapy sessions – wherein I bombard them with the worst of the depressing odds ratios I work with every day – most therapists pursue a different therapeutic direction. CBT is an evidence-based treatment, but I don’t know that anyone has ever evaluated whether it works as well on those who estimate the odds of catastrophe every day to earn their paycheck. I’ve had better luck with therapeutic methods that stress radical acceptance. I know the odds, but I am still learning how to sit with those fearful odds.
So, what does a statistician say to someone else experiencing the same physical symptoms when that person does catastrophize? What does she say when someone states without hesitation that she has cancer? What does she say when the odds are higher for that person, but more tests need to be run? What does she say when she’s been discussing the catastrophic scenario for her own symptoms for hours, and no one is catastrophizing over her?
I am scheduled to undergo a colonoscopy in a few weeks. I’ve experienced GI symptoms since I was a child. Most doctors have told me either that it was all in my head or just IBS. When I finally spoke up forcefully, I received a referral to an allergist, who diagnosed me with food allergies. I had come to roughly the same conclusion from my own research, and I accepted the diagnosis without ever having a colonoscopy. No doctor ever offered one, but since food allergies/IBS seemed to explain my symptoms sufficiently, I never pressed the issue. My current insurance sent me to a new GI about the same time as my fibro-or-whatever-it-is symptoms first appeared. He was quite surprised to learn that nobody had ever actually asked me about blood in my stool beyond the perfunctory. He listened when I said I really didn’t know, as with ADHD I tend to be blind to details. He requested samples, and he found blood.
My GI also asked me to obtain more information about my family history. This entailed speaking to my mother. I learned that multiple extended family members of her generation have recently been diagnosed with IBD. When she heard that I had blood in my stool, she didn’t seem overly concerned about me. She seemed most concerned about whether she, with her similar symptoms and equivalent age to her cousins at diagnosis, might also need to be examined. As she put it, “even if it is IBD, you’d be catching it early. If I have it, I’d be a late diagnosis and that is much worse.” In truth, she hasn’t seemed concerned about most of the symptoms I’ve experienced over the past few months. She has occasionally berated me for not calling her with the same frequency, for forgetting more things than usual, or for otherwise attending to the family with less consistency.
My GI seems to be thinking IBD, polyps or diverticulitis. One or more of these may explain the fibro-like symptoms, or they may just be an unrelated comorbidity. I may just have IBS and food allergies. He did, however, mention that it is important to consider various forms of cancer, though he didn’t think them the most likely explanation. This has fit my own research. The relatively new family history of IBD seems to further support his interpretation. My mother scheduled an appointment with her own doctor, and she had her own tests. Her samples also showed blood, and she is now scheduled for a colonoscopy only a couple of weeks after mine.
Statistically, she is more at risk of colon cancer than I am. I am in my thirties; she is in her sixties. She is also at the same age as many of her cousins at the time of their IBD diagnosis, and there are other possible explanations besides IBD. We need more data.
I told her this, attempting to be reassuring, and she called me a female dog for not caring that she was going to die. She completely, genuinely and wholeheartedly believes she has colon cancer. She has spent the weekend texting me information about her will, her bank account and how to talk to the IRS about her taxes when she’s dead. She has bemoaned how she has no one to take her home from her colonoscopy, while I am lucky enough to have a partner. I offered to fly home to take her, but she managed to refuse even as she complained about being all alone in the world.
I spent four hours on the phone trying to comfort her. It is rough on my psyche to be constantly told how I fail her, but she seemed so truly afraid. I didn’t – don’t – want her to be alone. I tried to teach her CBT techniques, breathing techniques, and other things that I’ve learned in therapy over the years. Odds ratios comfort me approaching my colonoscopy, but, then, I know I’m a little odd. I tried to offer her other comforts, and none worked. She’s still texting me about her will, and I’m still caught between the years-old hurt of the words she called me, the guilt that I’m not “there for her,” and a burgeoning fear that she might have cancer. Her odds are higher. Not 100%, by any means, but higher.
I relayed my splintered emotions to my partner after the call. It hurt so much to tell my mother not to leap to cancer as, “if blood in the stool automatically means cancer, then I would have to have cancer as well.” I’ve researched these symptoms enough myself to know other diagnoses are also on the table. It hurt to hear her reply that I am “still only thinking about myself, even with everything [she] is going through” as I tried to help.
“You could have cancer and you didn’t think to tell me?!” My partner seemed almost as afraid as my mom, and I was confused. “I’ve trusted that you have done your research. I’ve trusted that you have a statistical table somewhere with lists of all the diagnoses that you could have, with their likelihoods. I’ve trusted that if cancer was on the list, with even a 1% chance, that I’d know about it. Now I realize that you are so unable to draw attention to yourself that you’d never even think to research the odds of cancer. You are so afraid of being called selfish for daring to research it that you are incapable of researching it. You are crying over a person who called you selfish for even mentioning cancer for yourself. You are crying over someone who doesn’t care whether you live or die, and you are forgetting to tell the one person to whom you mean the whole world that there is a chance – however small – that he might lose you. How can you think that wouldn’t hurt me?”
I could only reply that I was in my thirties, and my mom was in her sixties. Statistically…
I’m used to being the voice of reason when WebMD always suggests cancer. I’m used to calculating the real odds. At least, I thought I was used to it. Now, I wonder if there is a grain of truth in what my partner said. I’ve told countless therapists that a bad enough outcome can still engender panic, even when I know the odds. So, why don’t I fear for myself now, even knowing the odds? Cancer would be a pretty bad outcome, no matter how unlikely.
I have no frame of reference for someone panicking over me, for someone for whom losing me is an outcome dire enough to fear however low the odds. I don’t know how to feel anything other than embarrassed to receive that attention I don’t feel I deserve.
I tell myself I live and breathe statistical realities, and that is why I am not afraid for myself. I tell myself I have done my homework and there is nothing to fear. Yet, I fear for my mom. The odds are higher for her, but are they high enough for the fear I feel? It was odd to see someone so rational become so irrational over me. Did my partner speak the uncomfortable truth? Have I so undervalued myself that I’ve done the opposite of catastrophizing? It was odd to see someone else with my symptoms, my genetics, and my family history automatically assume she had cancer, yet call me selfish for even hinting those same symptoms might mean the same for me. It was odd to objectively remember that my GI hadn’t ruled out cancer, yet to immediately feel bad for it. It was odd to feel guilt that I was detracting from my mom, who has it so much worse in her odds. It was odd to comfort my mother for my same symptoms, and then to have her call me selfish for voicing that I might also be at risk. It was odd for me to realize how immediately I worried about her, but that my partner was the first person to ever worry that way about me. It was odd to hear someone say that losing me would rip their heart in twain.
It is odd not to consider the odds for myself, but to be researching the odds today for my mother. Am I truly an excellent statistician to have always leaned towards autoimmune in myself, if I thought about the blood at all? Or is there something truly odd about me that I have never been able to muster a fraction of the fear I currently feel for my mom for myself?