Embrace the “I don’t Know”
My Story.
By, Cory Anderson
“So often, the world talks about illness in binaries- you’re cured or you’re not, the bone is broken or it’s healed, you’re healthy or you’re sick. People with chronic illness have learned how to live in the in-between”
I am an actress (currently on hiatus from auditioning/filming/everything due to…health stuff), and one of my side jobs is working as a Standardized Patient (SP)- basically, an actor who plays a patient with a specific case history (symptoms, previous diagnoses, medications, family history etc.). The idea is that medical students can practice their communication and empathy skills on a person trained to give them constructive feedback (and who has no pressing real-life issues that they need to solve). Since my own medical issues started, I rarely get to work (this or any job) since my energy levels aren’t reliable enough for anything in-person, but once in a great while, there is a telehealth practice session where we meet with med students over zoom and I get to play a patient other than myself. After we finish our interaction, we usually get a few minutes to talk about what went well, where they felt unsure, what they did or said that made me feel heard/trusted/supported etc. Often, someone will comment that they didn’t know what to do if they weren’t sure of the diagnosis. Now, as an SP, my job is not to discuss anything medical - as far as I’m concerned, what they diagnose is immaterial, it’s all about how they do it. Given my experiences of the past year, this moment always feels critical when we debrief. I tell them sometimes, you won’t know. You will come across conditions that aren’t taught in your classes or you’ll find symptoms that you’ve never seen before. IT’s OK not to know. As a patient, what I need from my doctor is for you to care, and to want to help. If you don’t know, tell me you aren’t sure and then tell me how we are going to start the search for answers, or tell me your plan to help my symptoms. The fact that you listen and you care can mean as much as an answer.
I have started and restarted writing to all of you at least a half dozen times and each time, I found myself pages in, rambling on, trying to find the heart of what I was trying to say. I finally realized that the point, like I tell my med students, is not to have all the answers, but to be willing to say you don’t know and then find a way forward together. My life turned upside down last July- I went from perfectly healthy, walking miles around a city on vacation one day, to being too sick to move (literally hours on end when wiggling a finger was beyond my ability). Months in, I was able to stand but walking to the end of my short driveway exhausted me to the point of hours of napping to recover. Since then, I have seen so many doctors who have run so many tests (the results were almost all normal, and even the abnormal ones came with no insights or answers) and fought hard to regain as much of my life as I can. “Fought” seems a strange word, given that the only thing that has helped is cutting out or modifying any and all exertion (physical, mental, emotional, sensory...). Pacing/doing very little is the only way I avoid constant crashes. From there, I start to slowly reintroduce tiny things to see what my body can tolerate. The world’s most intense elimination diet, but for pieces of life, not food.
In some ways, the worst times are easier. When you’re too dizzy to stand, you don’t have to choose between doing and not doing. You simply lie down because it is the only option. But now that I am finally able to do things, the not-knowing rears its head. My symptoms and tolerances swing wildly from week to week, day to day, sometimes even moment to moment. One day, I can walk around the block with no issues (albeit slowly compared to the average walking speed of the young adult population, but not the death crawl that I was barely managing at the beginning), but the next day, I’ll be halfway to the first corner and my breathing will tighten up, my lungs will constrict, and I know we have to call it and head home for me to rest immediately. If we don’t, I may trigger a crash that may last a day, may last a week. We just don’t know.
My doctors have had almost no answers for me. Most tell me they’ve never seen a patient with my particular combination of symptoms at this intensity. One told me that my physical abilities were worse than what he would expect of a 90-year-old stroke patient. A few refuse to discuss my symptoms or concerns and tell me I just need to try harder or maybe some therapy. And a few just don’t know but will take any loose thread and follow it until we know if it leads somewhere (no luck so far). For the most part, we’ve been on our own. We know it all started with a severe covid infection, but the infection cleared within two weeks. A year on, I still need a wheelchair, earplugs and sunglasses to leave the house. No one knows why.
When we realized that the doctors didn’t have answers, my saint of a fiancé (now husband), turned to the internet and began researching. Remember what I tell my med students about it being ok to not have an answer and solution as long as they can offer some compassion and a what to do next? This is my hero jumping head first into “what can we do next”? I don’t know how many medical journals and research papers he read while I spent 16 hours a day asleep, just trying to exist, but it was a lot. And it helped us find a way forward. We learned words like dysautonomia, we read about circulation, ventilation perfusion, neurology, immunology, virology, cardiology….and while we didn’t find definite answers, we found paths to explore. We came to appointments with questions, we were able to recognize individual symptoms amidst the overwhelming sense that everything is just wrong. We learned what treatments might help and which might hinder. And eventually, we stumbled onto the diagnostic criteria for myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and for the first time, something described what we’d been dealing with in a way that long covid papers and patient testimonials didn’t. It described a possible path forward.
Even today, none of my doctors are very familiar with ME/CFS. Some refuse to even acknowledge that I’ve spoken, if I mention it in a visit, and just carry on talking. They will pretend I haven’t just shared the fear of facing an often lifelong and life-changing condition. A few will tell me they don’t know but will talk through any specific concerns they do feel qualified to address. They will help find diagnostic/treatment/symptom management options that might make things easier and help me avoid referrals that might cause more issues than they solve. They may not feel comfortable diagnosing, but they are very willing to partner with me for referrals, disability applications and parking placards, and anything they can do to help. (Are you seeing a pattern here yet?)
The other thing that has been an absolute game changer for me, in ways I could never have anticipated, was leaning into the communities of those suffering from ME and other chronic illnesses - people who are well versed in not knowing, adapting to their bodies’ ever-changing needs and managing symptoms with no testable causes. So often, the world talks about illness in binaries- you’re cured or you’re not, the bone is broken or it’s healed, you’re healthy or you’re sick. People with chronic illness have learned how to live in the in-between, the weird grey pointillism painting made up of every improvement, setback, new supplement, flare up, or reaction to the minutia of daily life that will somehow trigger our symptoms. I didn’t realize how much I needed to have friends who get it because they’re living through it. There is so much power in knowing that you all don’t know together. In a lot of ways, these communities have been so much more helpful than the doctors we’ve seen, because they want to help, as opposed to cure.
And for anyone who may be reading this as a friend/family member/ chronic illness adjacent person- we know you don’t know and that is ok. I am incredibly fortunate that most of my closest friends and family get it as best they can without going through it themselves. They will roll my wheelchair any and everywhere I need to go; they have adapted or canceled plans on no notice if my symptoms are flaring or I’ve accidentally sent myself into a crash trying to get ready for them to pick me up. And they have asked, with all curiosity and care and no judgment, whether I need a break, a quieter space, a chair (they usually have a chair ready and waiting and I have been sat down without realizing it when they see that tell-tale warning glaze pass over my eyes.) ME, dysautonomia, any chronic illness is not one size fits all. Just as one person with a cold might need cough drops while another needs Kleenex, not everyone with a condition needs the same things or experiences the same symptoms and triggers and flares. Embrace the “I don’t know” and observe or ask rather than deciding what they need for them. The best way to get it, is to know that you don’t, but to stay curious, to listen, and to care.
Lately, my symptoms have been milder and the crashes have been more manageable. Am I heading towards a very rare, unicorn remission? Am I in a fair-weather season while my pacing and modifications are serving me well, but heading for another tumultuous season of big, prolonged crashes in the future? I have absolutely no idea. But I know that what I’m doing is working for now. I am practicing taking the good days for what they are, enjoying them as much as possible, trying to remember to pace as best I can so I can have more of them. And when the crashes hit, I remember that they don’t last forever; I practice resting, fully unplugging and hiding the things that feel like resting but aren’t (goodbye social media and screen time). I am optimistic and curious about how I will follow my dreams and big goals and world travels going forward. I am working on accepting that they might look different than I expected. (Honeymoon in a wheelchair? We hear Singapore is very accessible…)
I am practicing getting comfortable with saying “I don’t know, but here’s what we can try” and taking either success or failure as a win because it gives me one less complete unknown. So here’s to a summer of unknowns, trial and error, and figuring it out as we go along, together.
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