'I lived with a chronic disease for years. The hardest part was people not believing me.'

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.

WATCH: Sarah Wilson on why women burnout, get tired and sick. Post continues below.

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 chronically ill 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?

Research shows there’s a whole lot of people living with unexplained symptoms of a chronic illness 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 of 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 mould 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 TEDxDeerfield. 

 

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I got to give a TEDx talk last night! . I talked about chronic illness and the diagnostic experience and everything I’ve learned over the course of almost 70 podcast interviews. I wish I’d known all of this years ago. . After the talk, one of the volunteers told me that she’s in the middle of this whole mess herself and that she felt incredibly validated to realize she’s not alone. Getting diagnosed with a chronic illness can be lonely and exhausting, and it’s disconcerting to realize that it’s nothing like we see on tv. . It will be a few months before the video is available, but you can read the text right now via my bio link. . . . . . #chronicallyill #chronicillness #spoonielife #spoonie #butyoudontlooksick #invisibleillness #disability #tedx #tedtalks

A post shared by Brianne Benness (@bennessb) on Feb 16, 2020 at 5:57am PST

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.

So far, I’ve learned that common misunderstandings about diagnosis leave genuinely sick people feeling isolated and unsupported, just like I felt.

Many of us have spent years wondering if their symptoms are all in our heads. And even worse, people 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.

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 specialised 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.

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 prioritising 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.

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.

 

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Trying to practice non-attachment this week, or something like that. I’ve got my first round of neurological tests and a cardiologist appointment. Plus, @zawdawg will be setting up his booth at Paradise City Arts Festival while I toodle around the medical campus in Springfield. . I’m doing so much better than I was in the moldy house, but sometimes my hands stop working. Sometimes my heart rate spikes as if I’m doing cardio when I’m just standing by the sink, getting a glass of water. Weird stuff happens. . It has been so much easier to get my doctors to take me seriously than it was two years ago. And this makes me really angry. I have fewer symptoms than I did then when my PCP refused to refer me to neurology or rheumatology. When she offered me antidepressants for my tremor and nerve pain and swollen joints. . So over the next couple weeks, I might get a new diagnosis. I might get a protocol and a prescription and a tidy story to explain all the weird stuff that my body is going through. But I also might not. In fact, it’s incredibly likely that I’ll get formal names for my symptoms (some of which I have already), without an underlying explanation. This happens all the time, but it’s barely represented in media. . I recently asked people on twitter how long it took to get a diagnosis after they first begun to think that something was seriously wrong. So far, I’ve received about 100 responses. I can count on one hand the number of people who reported their time in months instead of years. I am no longer surprised when people say it took 10 years, 20 years. I’m no longer surprised that so many people get a diagnosis without any real path to manage their symptoms. Medicine is complicated and we don’t know nearly as much as we think we do. We’re not that far from leeches. . Anyway, this is me. This week. I’m enjoying the sun and I’m working on my podcast and I’m getting lots of tests done that might change everything or nothing. . . . . . #chronicillness #chronicpain #spoonie #invisibleillness #spoonielife #dysautonomia #chronicallyill #disability #butyoudontlooksick #pots #posturalorthostatictachycardiasyndrome #fatigue

A post shared by Brianne Benness (@bennessb) on May 20, 2019 at 7:11am PDT

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.

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 fibre 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 fulfilment 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 fulfilment 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.

Mia Freedman spoke to Sylvia Freedman about what life is like living with a chronic illness in the episode of the No Filter podcast below. Post continues after audio.

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.

This article originally appeared on Medium and has been republished with full permission.