I wish I could tell you what’s wrong with me.
Since January 2014, I’ve seen over 50 doctors and undergone countless tests ranging from simple blood draws to spending five hours in a sweat chamber covered in purple powder. Based on hundreds of thousands of dollars of tests, appointments and treatments, I have received 26 potential diagnoses. All are partially true. None is entirely true.
If you ask the chief of neurology at Lenox Hill, I have autoimmune limbic encephalitis. If you ask the experts at the Mayo Clinic in Minnesota, I have central sensitisation syndrome, possibly triggered by Lyme disease. If you ask my internist, an infectious disease specialist at NewYork-Presbyterian, I have an autoimmune condition that is outside the current realm of medical knowledge. If you ask me, I’d say I have an amalgamation of all the above — and that the name honestly doesn’t really matter to me anymore.
For a long time, the search for a diagnosis was the most important part of my life. Having a diagnosis would have confined an amorphous array of unmanageable symptoms into a definable enemy that I could study, measure for size, and destroy.
It would also have made going to parties a lot easier.
“Having a diagnosis would have confined an amorphous array of unmanageable symptoms into a definable enemy that I could study, measure for size, and destroy.”
If you tell someone you’re sick, they want to know what you’re sick with. The diagnosis informs their behavior. Should they be worried? If so, how worried? Are you contagious? Is it fatal? Is it something that could happen to them too? And people are naturally curious. Few things pique our interest more than guarded, mysterious language. If someone says, “I have a cold,” we say, “Oh that’s too bad. Drink lots of fluids and feel better soon!” and then we move on. But if someone tells us, “I’m going through some health issues at the moment,” we have a million follow-up questions — though, we’ve been trained not to ask these questions as we’ve relegated health to the realm of the private, not to be inquired into without enormous caution.
Without a diagnosis, I had no easy answer to the question “What’s wrong?” If I said something vague but accurate, like, “I have a strange neurological illness,” then I would seem intentionally coy. If I listed all my symptoms, it would seem like I was complaining. If I boiled it down to one symptom, like migraines or fatigue, I would be underselling the severity and setting false expectations about how well I was. Without a diagnosis, I was a little kid who runs home after a day at the beach and proudly unfurls sticky fingers to reveal pebbles, broken shells, a crab’s leg, dried seaweed pods and sea glass. What are you supposed to do with that strange, incoherent display except smile limply?
Without a diagnosis, I had no story to tell to others, or to myself. It was lonely, confusing and scary. I felt like I was walking down a pitch-black street alone at night, with nothing but the glow of my cellphone to light my feet and an imagination to fill the darkness with monsters. Each negative test that ruled out a horrible disease added some light, but that brightness only served to make the darkness beyond even thicker, more impenetrable.
“If I listed all my symptoms, I would seem like I was complaining. If I boiled it down to one symptom, like migraines or fatigue, I would be underselling the severity and setting false expectations about how well I was.”
Searching for an answer consumed my parents and me until, eventually, I ended up at the Mayo Clinic’s Pain Rehabilitation Center. The driving theory of the program is that the most important thing about a chronic illness is not its name but rather its management. The quest for a diagnosis became secondary to a more important goal: living a good life that accommodates, but doesn’t focus on, my illness. Ultimately, it didn’t matter what we called my disease. What mattered was learning to live with it.
Therein lies the difference between something acute and something chronic. If you have an acute illness, the most important thing is to figure out how to make it go away. If you have a chronic illness, the most important thing is to figure out how to live every day in the vast gray expanse between sick and cured.
But people usually want to know what’s wrong, and how can you fix it, and are you better now? The narrative of illness that we embrace in our culture leaves little room for chronicity. We think of illness as a battle to be won or lost, with disease something you fight until you achieve victory, or die trying. We treat illness like war, and naming the disease is the equivalent of meeting the maxim: “Know thy enemy as you know thyself.”
For some, the language of battle might be important. When the stakes are life or death, the terminology of war empowers the survivor and absolves the dead.
But the metaphor of battle has a secondary consequence. It suggests that illness is transient, that it is a major event that one can either heroically overcome or die fighting. No battle lasts forever without a winner or a loser. It follows that no illness lasts forever. The language of war doesn’t do justice to the daily slog of chronicity.
“We struggle to embrace chronic narratives because they’re scary and uncomfortable.”
I understand the desire to put illness in terms of winning and losing battles. It’s comforting to think that with enough grit, enough firepower and medication and doctors and energy and sheer force of will, we can overcome anything that dares try to stop us. But the problem with this myth is the implication that those who continue to struggle daily, those who do not “win,” are simply not strong enough. We are not trying hard enough. And it allows the world to take another half-step away, siphoning off a little extra empathy to hand to those who will not squander it.
We struggle to embrace chronic narratives because they’re scary and uncomfortable. There’s something fundamentally disturbing about the notion that, even with all the best doctors, even if you do everything right, even if you exercise and eat organic and take your vitamins, even then, pain and illness could still be your daily companion. It’s uncomfortable to sit with the knowledge of unending suffering. It’s part of the reason why our news cycle is so short and getting shorter — we are good at feeling energetic bursts of sympathy, but we don’t often practice the prolonged empathy required of understanding something chronic, be it illness, structural racism, hunger, poverty or war.
But, like most things in life, illness doesn’t exist in black and white, but in the million shades between. There are many stories of people who become sick, find a diagnosis, undergo treatment and recover. And there are just as many stories of people who, like me, don’t have a precise diagnosis, a real prognosis, or an ultimate cure.
I wish I could tell you what’s wrong with me. But, even more than that, I wish that having a name and a clear-cut answer wasn’t held at such a premium in our discussions about and understanding of health. If we change the language we use to discuss illness, it might become easier for us to embrace new narratives, like that of the journey from sickness not to health, but to acceptance.
Have a compelling first-person story or experience you want to share? Send your story description to firstname.lastname@example.org.