When I was 29 years old, I got so sick that I had to stop working. I had this intermittent burning pain in my legs, I woke up each morning with sore and swollen joints, and I had a visible tremor. My body was so sluggish that I often needed help to get to the bathroom, and my brain was so foggy that I could barely read. I eventually quit my job as an editor before I was fired for making too many obvious mistakes. I rarely left the house.
Presented with all of these symptoms, my doctor ran a few standard tests and told me that everything looked fine. She didn’t see any reason to refer me to a specialist and she suggested an antidepressant if things didn’t improve.
I was devastated. I’d lost my income and my social life and I didn’t know where to turn for help. My husband of less than a year thought I was dying. My world was crumbling.
I was 22 the last time my world fell apart. That’s when my dad died and I felt devastated and alone. I went hunting for stories that perfectly captured the grief I was feeling. I read novels and essays and memoirs about losing a parent and they made me feel seen, like I wasn’t the first person to ever go through this.
And so later when I found myself disabled but undiagnosed, I went looking for stories about that too. But this time, I couldn’t find them. I couldn’t find any traditionally published essays or books about life before diagnosis. I found lots of stories that wanted to offer me hope, but none that could offer me solace.
But how could that be?
The CDC estimates that in 2018, almost 45 million people in the US were living with at least one chronic condition that interfered with their daily life. And according to those estimates, that number has been rising by more than 700,000 people per year on average. So it stands to reason that there are a whole lot of people living with unexplained symptoms right now, just like I was.
I bet you know someone with an undiagnosed chronic illness. Maybe they complain about their health all the time or they always seem to cancel plans. Maybe this has been happening for years and you’ve started to write them off as a hypochondriac, a drama queen. Maybe you believe that if something was seriously wrong, their doctor would have figured it out by now.
That’s what I believed. I believed that if you had a good doctor and a real illness, then diagnosis and recovery wouldn’t be far behind.
So why wasn’t that happening for me?
Since I couldn’t find any stories about life before diagnosis, I decided to start collecting my own. Over the last couple years I’ve interviewed almost 70 people about their experiences with chronic illness and I’ve released those stories on a podcast called No End In Sight. I also spend a lot of time on twitter, so I’ve heard hundreds — if not thousands — more anecdotes there.
Chronic illness is a pretty big umbrella, and it would be impossible to list them all. Some of them are triggered by an injury like a car accident, or something in your environment like asbestos, or an acute infection like the epstein-barr virus that can cause mono. Some of them are genetic, and some of them appear to be plain old bad luck.
But they all have something in common, and that’s the chronic part. They’re health conditions that can’t be cured and so they must be managed. Most people describe a baseline level of symptoms that they live with each day, as well as periods with more intense symptoms that are called flares.
It was a flare that forced me to stop working at 29, and it was caused by toxic mold in my house. These days I still live with daily symptoms and I don’t work full time, but I get a few good hours most days to read and write and participate in events like TEDx Deerfield.
Some people live relatively normal lives with their baseline symptoms, while many other people find it hard to leave their beds or their homes because their symptom baseline makes regular life impossible.
One woman I spoke to, Rachel, was diagnosed as a teenager with myalgic encephalomyelitis, or ME, which you might know as chronic fatigue syndrome. At the time, her doctor said that she’d rather be diagnosed with a treatable cancer than with ME. And if you don’t know much about chronic illness, that might seem incredibly inflammatory. Cancer is serious, and we all know it. But chronic illness is serious too.
It’s been years since her diagnosis, and Rachel told me she felt validated to have her illness taken seriously. And she felt like her doctor was being honest about how difficult life with chronic illness can be, even if it’s not life-threatening. Many chronic illnesses are unlikely to take your life but incredibly likely to take you away from the life you love.
Over the course of my interviews, I’ve learned that common misunderstandings about diagnosis leave genuinely sick people feeling isolated and unsupported, just like I felt.
Most people I interview have spent years wondering if their symptoms are all in their heads. And even worse, they often feel like their loved ones believe that too. Like their loved ones are writing them off as weak or lazy.Without medical confirmation of their illness, a lot of people feel uncomfortable asking for accommodations or using mobility aids. And without a diagnosis, people can’t access benefits, disabled parking passes, or even patient support groups.
And it turns out that diagnosis isn’t as clear cut as I’d always believed. Not only does it take a long time, but people are often misdiagnosed along the way.
I’ve interviewed two people with a genetic condition called Ehlers-Danlos Syndrome who were initially diagnosed with lupus, an autoimmune disease. I’ve interviewed someone with Lyme Disease who was initially told she had diabetes, and someone with diabetes who was initially told that nothing was wrong at all.
And almost everyone I interview has had a doctor try and blame all of their symptoms on stress, depression or anxiety. Often, doctors will suggest this is the cause without consulting a mental health professional and without offering further testing or specialized care. This was what happened to me when my doctor suggested an antidepressant instead of referring me to a neurologist.
But even when you and your doctor both feel confident that your diagnosis is accurate, it might not explain anything. If you have an autoimmune condition like Hashimoto’s Disease, you might learn that your immune system has started attacking your own tissue, but nobody’s sure why. And there are clinical diagnoses like fibromyalgia that we still don’t know how to identify in lab work and so you find yourself wondering what is happening in addition to why.
As if that’s not frustrating enough, your diagnosis might not even come with good, evidence-based treatment options. Science and medicine are still looking for answers, but research funding is not distributed in a way that I’d call fair, and it can take a long time for academic research to make its way into medical practice. So many people I talk to are cobbling together their own treatment plans with some combination of off-label drugs, dietary experiments, and plenty of rest. Resting is actually one of the most effective tools for preventing and managing symptom flares. But prioritizing rest is incredibly difficult and sometimes impossible when you have bills to pay and a family to care for.
Our medical system also has this glaring problem that there’s no feedback loop to let doctors know when they’re wrong. If you’re living with unexplained pain or fatigue and your doctor can’t help you, you might look for another doctor. And while your new doctor may help you get a diagnosis, your old doctor will go on wrongly believing that you were just another anxious hypochondriac.
So how exactly do you get a diagnosis?
Let me explain that by telling you about Felisha, a woman I interviewed. When Felisha was 25, she started to feel an intermittent tingling in her legs. She was referred to a neurologist who ran some nerve conduction tests and told her she had idiopathic neuropathy before sending her on her way.
“Idiopathic” is one of those terms that comes up a lot in these stories. It basically means “yes this is happening but we don’t know why.”
Anyway so Felisha kept working long days on her feet, and her legs kept… misbehaving. Over the next three years she began to need longer breaks to get some relief from this neuropathy. When she was 28, it was such a problem that she had to stop working. Felisha told me that she could hardly walk, but she needed to make something up when she called off work because she didn’t actually have an explanation to give her boss.
And I want to tell on myself a little bit here by letting you know that a lot of stories start this way. Right now, this story could be about fibromyalgia or functional neurological disorder or ME, which I mentioned earlier. But I chose Felisha’s story because unlike the diagnoses I just listed, her illness is no longer shrouded in skepticism and stigma.
After a few weeks of using her grandma’s walker to get around the house, Felisha went to the ER where she got an MRI and was diagnosed with multiple sclerosis. Felisha spent six weeks in the hospital trying to recover from a flare that might have been avoided or at least diminished if her MS had been caught earlier, when her symptoms first started.
That time between symptom onset and diagnosis is glossed over in a lot of illness narratives. For Felisha, that time lasted three years. I’ve spoken to people who were only in this stage for a few weeks and I’ve spoken to people who were in this stage for literal decades. People in this stage are often classified as problem patients, the worried well, hypochondriacs, malingerers and even drug seekers.
People in this stage can feel isolated and crazy and scared because their bodies are failing them but nobody knows why. They have little support from friends, family and employers because many members of the general public don’t know about this stage at all. They watch House or Grey’s Anatomy or ER and they believe somehow that diagnosis should be instantaneous.
But it’s not instantaneous.
First, there’s the alarm you feel when your body stops behaving the way you expect it to. And the frustration when all your test results come back normal, so you wonder if it’s all in your head.
In our current system, most doctors can only spend 15 to 20 minutes with each patient, which is not nearly enough time to share your comprehensive health history. Most of my interviews take well over an hour.
In those early appointments, you might feel like your doctor doesn’t really understand what’s happening to your body and how serious it is. Fatigue, for example, takes on a whole new meaning when you become chronically ill. It’s not the same as being tired, and you’ve got a vocabulary problem if that’s what your doctor hears when you tell them about your fatigue.
Randee, a woman I interviewed, spent decades looking for answers before she was diagnosed with Ehlers-Danlos Syndrome at 50. She learned to describe her sometimes debilitating fatigue to doctors by telling them she felt like she’d had two bottles of benadryl.
Next comes the difficult and often slow process of validating your symptoms.
Our private insurance system can be tough to navigate, and it often refuses to pay for tests or treatments that your doctor thinks you need. And of course, not everybody can afford insurance in the first place.
So in order to access specialized care, you need approval from your insurance company, and you need the money to pay for your deductible or your copay, and you need to be able to get time off work, and you may need to travel to another city or even another state to find somebody who might be able to help you. Specialized care isn’t accessible to a lot of people.
And even if you can access specialized care, you still need to find a doctor who believes you. Systemic bias in medicine is a huge issue, and it leads certain patients to be seen as less credible. Some of the people impacted by this bias include Black patients, women, young people, anybody with a preexisting mental health diagnosis, and folks who are told to lose weight before they can access followup care.
But if you have the energy to be persistent and the money to pay for specialists and the support to travel to multiple doctors, then your chart will begin to fill up with the formal names for your symptoms.
My chart, for example, now says that I have small fiber neuropathy and postural orthostatic tachycardia syndrome. Neurological stuff.
At some point after validating your symptoms, hopefully, these symptoms start to tell a story that your doctor understands. At some point you get a diagnosis.
Diagnosis itself can be very fraught. People tell me over and over again that their diagnosis brought them validation, because it confirmed that they hadn’t been imagining their symptoms this whole time. It gave them permission to rest instead of constantly pushing their bodies until they flared and to ask for accommodations. It also gave them the language they needed to connect with other people who understood, and I can’t overstate how important this is. Access to patient communities changes lives.
But diagnosis can also be anticlimactic. Like I said earlier, it doesn’t always come with an explanation, let alone a cure. And sometimes it comes long after you’ve started to manage your symptoms with the limited options that are available.
And a really strange thing about diagnosis is that it’s sometimes the first time that the people around you acknowledge your struggle and express sympathy, as if the diagnosis itself is the bad news. But when you’ve been living with unexplained and disabling symptoms for months, years or decades, the diagnosis itself is usually not the bad part. It might even be a relief.
Even if you’re relieved, this whole process can be riddled with grief. Earlier, I mentioned losing my dad, and how hard that was. When I became chronically ill, I felt like I was losing myself. Still, I find myself grieving the life I had before. I used to manage an online publication and collaborate on a monthly storytelling event and volunteer three different places every week. I used to get my fulfillment from the things I did. And suddenly I couldn’t predict how well my brain or body would function on any given day and I had to look for fulfillment elsewhere.
But when I lost my dad, everyone around me had some context for the grief I was feeling. Even if they hadn’t lost a parent themselves, they’d seen stories about losing a parent on tv and in movies and in books. They had a vague idea about what they were supposed to say. When I got sick and disappeared from my own life, most of the people around me had no context for what was happening. They didn’t know you could get that sick and never really get better, and since they’d never seen a story like mine before, they struggled to imagine what I was feeling or what they were supposed to say.
So hopefully today, I’ve been able to give you a bit of context for what it’s like to become chronically ill.
I’m sure some of you have been through this process yourselves and are managing a chronic illness right now. And I bet some of you are still in that excruciating stage where everyone around you implies that it’s all in your head. It’s not. It just takes time.
And maybe some of you are health care practitioners who went into medicine because you wanted to help people, but you don’t know what to say to patients you can’t help. Let me tell you right now that one of the most powerful things you can do for a patient who might be chronically ill is to believe them, even if you don’t know how to help them.
And actually, that applies to all of you. The most powerful thing you can do for anybody in your life who’s navigating an ongoing health issue is to believe them.
Believe that they’re trying as hard as they can to get to the root of the problem, instead of imagining that you’d know what to do in their situation.
Believe that they’re using all available resources to build a better life, instead of bombarding them with advice about how to get healthy.
Believe that they’ve learned their body’s limits through exhausting trial and error, instead of encouraging them to just push a little harder.
And more than anything else, believe them when they tell you how they feel, instead of looking for a silver lining in their pain or their grief.
Whatever they’re going through, believe them. It’s enough.