How to feel invisible
My journey with chronic pain
I became a chronic pain patient three years ago, in a bad skiing accident. I tumbled ~400ft down a mountain in Tahoe and dislocated and tore the ligaments in both shoulders—my right for sure, probably my left too. Both immediately slipped back in on their own, and because I’d never been injured like that before (plus, adrenaline), the lingering weakness didn’t seem like a big deal to me—or, puzzlingly, to my GP.
My injury went unaddressed for nearly two years
One torn ligament rewired everything. My posterior ligaments tightened to compensate, my chest weakened as my lats grew tighter, nerves flared, my shoulder subluxated over a dozen times. Through half a dozen PTs and doctors, no one suggested an X-ray or MRI. They would just ask me: “How bad is your pain on a scale of 0-10?” Um, a 6?
Physically, I felt okay. Mentally, it completely changed what I thought I was capable of. This mismatch between how I looked and what I could do was confusing.
I was in denial of my situation, subconsciously rewiring my brain to avoid anything that could cause pain. Working out, climbing, tennis, ping-pong, lifting boxes—I stopped it all. In a vicious cycle, my body grew weaker and weaker, stillness the only way to avoid pain.
One day, I somehow found it in myself to look for an answer.
After about three months of wrangling the American medical system, I was finally referred to a competent orthopaedic surgeon who immediately suggested an MRI. Turns out, I had a tear in my right anterior labrum. It explained all my pain, subluxations, weakness, and compensated muscle and ligament damage.¹
The relief of anxiety, and borderline euphoria, after hearing a diagnosis is hard to explain with words. When you live with unknown pain for long enough, the uncertainty starts to eat away at your soul. You wonder if any of it is real, whether it’s just a random thing like a migraine that’s supposed to go away on its own. Everyone including you, especially you, starts to downplay your symptoms. You deny the pain, avoid the simple triggers that once brought joy to your life.
Eventually, your “initial complaint” becomes a footnote in your life from years ago, giving everyone just enough space to ask: “are you really still even injured?” It makes you doubt yourself, your pain, your thoughts, everything. So when a doctor finally says “yes, this is real, and we can fix it”, I was really, really excited.
All eyes on me
The procedure was straightforward. The odds of complications were low, and the Xanax they gave me for my “pre-op anxiety” smoothed the edges while the anaesthesia felt like I transported through space and time. I don’t even remember the nerve block.
I woke up from the surgery and I was ready to go. My partner sat next to me taking hilariously bad pictures while the nurses gave me extra orange juice for the road. After just 15 minutes, I was in my sling, calling my Uber outside with my other arm to go home. Just like that.
Reality set in a few hours later. First, I was visibly disabled—overnight, I became something that people now needed to “work around.” I was locked in a sling for six weeks, and not a very sexy one at that. I couldn’t do my own laundry, couldn’t carry a backpack, ride a bike, most doors are made for two-handed people apparently, and the bus doesn’t give a shit whether I find a seat in time.
It was tough to lose physical agency, but it wasn’t that bad. I knew what I was getting into. What was hard wasn’t my physical disability but my perceived disability from others. Out of love, friends constantly over- and under-assumed what I could do. They’d offer to do things I’d rather do myself, not knowing I already started PT, that I could still hold things, get in the car alone. The sling was mostly insurance against jerking my arm on a bus pole, but how would they know that?
In the wider world, nobody noticed. It was freeing at first, but that novelty faded quickly. Every bus that drove off before I sat down, the sharp glances at restaurants when I awkwardly cut my food and ate with my left hand, the rush of shoppers in CVS who pushed me aside as if I wasn’t clearly injured. No one cared. Pure, genuine indifference. I was shocked at first, but I mean... why would they care?
Invisible
In the sling, people over-corrected. When it finally came off, they corrected in the opposite direction. As unsexy as it was, my disability was clearly visible at first.
We all have an image of what a person with a “disability” looks like. But when that visible sign goes away, most people assume you’re just “healthy” and “normal.” With the sling, at least people could see something was wrong. Without it, I was just another young, healthy-looking guy walking around SF.
Nobody could tell that I couldn’t hold my arm above my shoulder, that my arm would give out if I held anything heavier than a box of pasta, that I’d spend thirty minutes massaging and fidgeting my shoulder on a bad day. People would bump into me or hit my shoulder on accident, and a piercing pain would still shoot through my body because I was still just too weak. For four, five more months I lived in this strange in-between—too recovered to look injured, too weak to do most of what people assumed I could.
The worst part was how small it made me. Not the pain itself, but the flinching. The constant, quiet calculation of whether I could open a door, carry a bag, shake someone’s hand. I became someone who planned around pain, who arranged his whole life around avoiding a thing that no one else could see. And the longer no one could see it, the more alone I would feel.
I think the most isolating part of chronic pain most people don’t realise is that it really is invisible. If it hurts, you stay home. You’re usually only out in public when you feel mostly okay. And if you’re in pain while you’re outside, you just deal with it in silence.
That silence—between what I felt and what the world reflected back—was the loneliest place I’ve ever been. It took a long time to build strength, mobility, and my self-confidence back. I don’t think there was a single moment where I decided to “stop being invisible.” But I wanted to write this for anyone else out there who might be feeling the same thing.
Now
It took a long time to feel more “normal” again. Months of rehab, so many gym sessions, hours and hours of stretching and yoga that I used to make fun of. I think the first time I really noticed was when I carried a heavy bag of Costco groceries up the stairs without a piercing pain. I can now carry my laundry down the stairs again. I can reach for a cabinet without bracing myself. I can ride a bike, open doors with one hand or two, and the bus still doesn’t give a shit whether I find a seat in time.
But the pain never really goes away. Some days, it’s not so bad. Some days, I’m not in any pain at all. But I know my body will never be the same. My shoulders pop, lock, and throb almost randomly. Ibuprofen sometimes works, but not always.
It’s so easy to slip away into your mind, paradoxically trapped thinking that you’re not allowed to talk about your pain because someone might judge you. But they won’t. And the ones who do?
They were never worth your time anyways.
¹ UCSF has an excellent care team, who immediately found an operation date and a series of pre-op PT sessions to match. Dr. Drew Lansdown was fantastic, and Dr. C. Benjamin Ma is great too. The UCSF PT office is absolutely top tier... Highly recommend!!
What can we do about it?
To this day, I just wish the doctors believed me on day one.
Even after a whole surgery and months of rehab, I’m still in pain. They say there’s nothing wrong with my body anymore, but so what? As a scientist, I know that chronic pain care is complicated.
We know there are at least three different types of chronic pain:
Nociceptive Pain: Physical tissue damage like a bruise.
Neuropathic Pain: Nerve-level, “electric” or “burning” pain from stimulation or damage to the nerve.
Nociplastic Pain: When structural damage and pain severity is uncoupled. You look “physically okay” but still in a world of pain. A sort of “phantom pain.”
Currently, the only way for doctors to measure chronic pain is to just ask:
“How bad is your pain on a scale of 0-10?”
To this day, we compress this complex, multidimensional experience into a single number. In doing so, you lose a lot of nuance in these three types of pain, giving room for doctors to doubt you, under-diagnose you, and under-treat you.
This creates rippling systemic effects beyond your GP’s office. The 0-10 scale is still the main primary endpoint in clinical trials for diseases that cause pain. This includes osteoarthritis, migraines, endometriosis, chronic lower back pain, and more. We know >95% of all clinical trials fail not because the drug doesn’t work at all, but because they don’t work on enough people.
I think chronic pain care has a match-making problem, where we’ve probably created some really great therapies in the past, but they failed in trials because they only worked for some people (e.g. nociceptive pain patients) and not for others (e.g. neuropathic pain patients). I believe this is the case for many chronic pain diseases. A new tool that makes the many dimensions of chronic pain visible and measurable — even in just one disease at first — will transform all chronic pain care.
What if chronic pain could be measured and typed like we do blood types?
If there was a “chronic pain test” that could’ve worked with me to describe my pain on top of the 0-10 scale, maybe my doctor would’ve paid attention to me at the first visit, and maybe I could find a better treatment today.
So I’m going to try to make it.
A non-invasive ‘chronic pain test’ is now within reach. I’ve begun assembling a coalition of world-class chronic pain researchers, clinicians, founders, and leaders who believe the same. We’re building it together, and I’ll be writing more about the path forward soon.
I worked a bit with a chronic pain researcher at NIH. The field has developed a lot recently, but a lot of recent learnings have not been translated into standard clinical practice. For one thing, the ends of the scale should be clearly defined - 0 should be no pain, and 10 should be the "worst pain imaginable". Pain needs to be understood as operating on a logrithmic scale, also - see the work of Andrés Gómez Emilsson: https://qri.org/blog/log-scales
Random sampling via cell phone messages, called ecological momentary assessment, can be used to more accurately understand pain temporal dynamics, and having patients draw pain diagrams can give a much more detailed understanding of pain location and type, aiding diagnosis.
Thank you for sharing, and for working on subtyping.
A lot of your experience sounds familiar to me (ME/CFS). Invisible disability, people never see the bad days, the doubting and downplaying. People get very weird around disability that doesn't fit their preconceptions. I like the term "dynamic disability".
Anyway, I subscribed, and good luck!