By the end of the day,everythinghurt.
My skin felt so sensitive I tried not to rest my arm on the table.
I was 32 and had always been healthy.
Amanda K Bailey
I assumed Id get better in a week.
My right hand sometimes hurt too much to use, and a deep ache radiated through my butt cheeks.
After five months of daily fever and flu symptoms, I was so weak I struggled with stairs.
I started spending a significant part of each day in bed.
I still wasnt sure what was wrong with me, but I knew it had to be something terrible.
So why did test after test continue to come back negative?
Extremely general, they said.
They didnt seem to have the time (or maybe interest) to investigate further.
Sometimes these things just go away on their own, one specialist told me, waving his hand vaguely.
I hadnt been able to get my daughters to school or pick them up in months.
I was trying to focus on small victories, like walking from my bed to the couch.
I sat at the table for the whole dinner!
I wrote proudly in my journal after one particularly successful evening.
A kind babysitter had cooked the meal.
I felt worse whenever I ate.
Take Advil, I was told by several doctors in a row.
I couldnt bring myself to text my friends back anymore.
What was there left to say?
I had been paused.
I became desperate for an answer.
Even if I never felt better, I needed to know what was wrong.
How could something so debilitating be so mysterious?
And then, finally, my primary care doctor called with news.
I think you might haveLyme disease, she told me.
She had rerun a few tests, and the results were different now.
I was flooded with hope.
I was also confused.
It had seemed much more straightforward then: easy to diagnose, easy to treat.
We took a standard course of antibiotics and got completely better.
The sickness had barely registered; though I do remember the medicine being a delicious bubble-gum flavor.
Now I was living in Brooklyn, and spent only a little time in parks and upstate.
I hadnt noticed any rashes or ticks.
Also, my test results werent totally conclusive.
Apparently, the chances of getting a false positive in that case are high.
But, as I would soon learn, there is a lot of debate about what exactly this means.
Immediately, I began to get a sense of a more complicated picture.
Here were people who werent using antibiotics at all, but instead tryingozone therapyandcuppingandbee stings.
You may not have any idea that you were bitten.
A partial positive is still a positive.
Even if you get antibiotics early, they may not be enough to cure you.
This is not a straightforward disease: A lot of people never feel better.
My primary doctor sent me to another specialist to confirm her tentative diagnosis.
He laughed to himself, but in a seemingly annoyed way.
Then he explained the obvious to me: You live in the city.
He suggested I see a neurologist about the muscle spasms.
Trolls harassed participants on the Netflix showAfflicted,accusing them of lying, of being despicable hypochondriacs.
They were traumatized by E.R.
visits from which they were sent home during a terrifying health crisis with some Aleve.
They were told over and over that they were actually completely fine.
Listen, one specialist said to me, youre young.
As though looking good must mean I felt good too.
Even some friends and family couldnt always quite keep track of my strange illness.
It was a problem of context: There were simply no guidelines for this throw in of situation.
But not every disease, I was learning, was so cooperative.
Could it be that I had a disease that still existed in the gray areas of medicine?
What if I had a disease that the CDC didnt yet understand?
Maybe the standard course of antibiotics wouldnt be enough for me, either.
I made an appointment with a Lyme-literate doctor, wanting to be as thorough as possible.
Like my primary doctor, this doctor was compassionate and seemed to care about my suffering.
But what did I have to lose?
Quite a bit, it turns out.
Maybe the Lyme warriors were right and my disease had progressed too far to respond to the standard approach?
As it turns out, I should have looked closer at the Lyme test itself.
But I was sick for eight months before I even heard the wordautoimmuneused to describe symptoms like mine.
Someone in the #chronicillness community had recommended the book and I couldnt put it down.
Autoimmune symptoms are often nebulous in that they involve the entire body.
Some of the most common symptoms are muscle pain/weakness,joint pain, fatigue, and low-grade fever.
Basically, the feeling of having a flu that never ends.
So why hadnt anyone mentioned the possibility that I might have anautoimmune disease?
It can take years to get an accurate autoimmune diagnosis.
The complex, comprehensive nature of many autoimmune conditions may contribute to difficulty diagnosing them.
After all, how can someone who is truly ill become suddenly better, then sick again, indefinitely?
Then theres another problem: a long history of disbelieving women.
They describe, almost to a woman, being disbelieved and dismissed by doctors.
Ive met them at some of the most important appointments of my life.
And I have had many, many appointments.
In fact, I saw 20 doctors before I learned what was actually wrong with me.
The answers that finally emerged had nothing to do with Lyme disease.
But I couldnt feel lucky.
I was so ill by then I could barely get myself onto the exam table.
And then, immediately, she said, I know whats wrong with you.
But…are you sure?
She said, Lets get you better.
I inject myself once a week with Humira, a biologic that helps to calm inflammation.
Instead of being excited, I was terrified.
Normalcy was so incredible that I thought regressing again might break me.
I continued to slowly improve.
I felt happy again for the first time in over a year.
I began to have longer and longer stretches of fragile functionality, punctuated by weeklong flares of viral symptoms.
In other words, I was doing amazingly well.
I have come to think of that sense of potential as the hallmark of health.
I am 34 now.
Some days I am bowled over by thankfulness.
I feel the hum of the miraculous in my little, ordinary routines.
I am, somehow, okay.
I have lucked into this chance to feel well enough to live my life instead of just surviving it.
I have days, sometimes whole weeks, each month when I feel magnificently normal.
But I will also never be the same again.
To me, the women who pursue a chronic Lyme diagnosis are not stupid or crazy or gullible.
They are working with the information they have.
They are looking for answers.
They just want to feel better.
And they deserve better.
They deserve real answers at the very least, and preferably, they deserve useful treatment.
I have followed many young women online whose posts about Lyme eventually give way to posts about EDS.
Other rare diseases are slowly unveiled.
Certain symptoms that were attributed to Lyme become more pronounced until they reveal a link to some other condition.
And of course, when a woman describes her constant flu symptoms, I think of autoimmune disease.
When she thinks her partial positive on the Lyme test proves Lyme, I think it may prove autoimmune.
My most debilitating symptoms have never fit perfectly into it.
What if I relapse suddenly, with no explanation?
Maybe, I think, there isnt a single title I can give the erosion of my health.
