In this day and age of social media: Facebook, Twitter, Instagram, personal blogs and even GPS tracking, potential employers are now regularly checking prospective employees’ social media pages before hiring or promoting for a position.
With that lurking over our heads, it’s unnerving to come out and tell the world about an invisible illness, while we might be unknowingly telling a future employer or insurance company about our illness. What goes on the internet stays on the internet–for anyone to see.
For that reason, the person sharing their story in this installment is choosing to remain anonymous. We all understand that it’s hard to share such personal stories, and appreciate the courage it takes to put them out there for all to read, even anonymously. I am so thankful to each and every one of you. It is with this courage, that one-by-one, we are beginning to shed light on the plight of “We The People” living with invisible illnesses.
With that said, let me introduce this week’s Voice of Invisible Illness:
Anonymous: Invisible Illness – Lyme Disease
It all started two and a half, maybe three years ago…
“I’m really sorry but I’ve got to go home. I’m not feeling well. I must be coming down with something.”
“Are you sure? You look okay.”
I can’t say with any certainty, how many times that form of conversation occurred.
I felt bad having left far too many evenings with friends when a sudden, overwhelming fatigue and ache I can only compare to an impending bout of the flu that was about to hit. I knew I had to get home, take care of my dog, and get into bed.
I don’t have a great track record as far as noticing physical issues. So if I felt bad enough to leave in a taxi, when home was only a 10-20 minute walk away, it was bad. I was not okay.
I’m not sure when it started. It’s been gradual, punctuated with the start of several other, seemingly disparate issues.
Some friends say they noticed me having difficulty moving, finding a comfortable position, and having dizzy spells in the late fall of 2013. What I do know is that I developed a strange “tic” in 2014. At least that’s how the neurologist I saw described it. It doesn’t conform to any existing syndrome or cause. It involves my mouth and jaw. It’s difficult to describe. Thankfully, It’s not something that people notice but it creates a lot of pain, sometimes migraines and dental work can only be done when my tongue is clamped down and I’m extremely sedated.
It isn’t anxiety related. It didn’t seem to be related to anything.
I also know that the ache (which was originally in my back and feet), got bad enough for me to complain in May of 2014. I was told that it was a result of some sort of physical manifestation of anxiety. I argued that it was a deep, migratory ache rather than any sort of tightness. I was prescribed a muscle relaxer. It didn’t help; it just made me more tired.
At some juncture, I decided it was the result of a bad mattress, or maybe too much time wearing impractical shoes. I bought a new mattress and a few pairs of comfortable shoes. Neither helped. The ache slowly spread to different parts of my body and the fatigue just got worse. Another drug was added to combat the exhaustion. I was constantly reassured that this was a temporary situation.
One Saturday, in late May of 2015, I started having sharp, knife-like pain in my spine. I couldn’t move. I called my doctor sobbing. That was the day I started, very reluctantly, taking narcotic painkillers.
I’ve needed them almost every day since.
The next four months were spent trying various “control” drugs for fibromyalgia. I dubbed it the “summer of zombie-like effect.” I joked that I was going to petition the FDA to make my terminology an official side effect. None of the medications helped the pain. Oddly, one seemed to help a little with the weird mouth movements. But what I really did that summer was spend a fortune on therapy trying to accept that I had fibromyalgia. I should have followed my gut—it just never felt like the right explanation…
I decided that I had to learn how to deal with the symptoms the best I could and to move forward with my goals. I started classes that fall. Last fall. (The last two-plus years have become a blur…) I was doing really well. But it was school, dog, reading/assignments and almost nothing else. I had started experiencing “fibro fog” (i.e., cognitive exhaustion) in the evenings many months before, giving me yet another symptom to work around. By 8 or 9 pm, almost every night, I was too out of it to follow tv, much less study or socialize. But still, I was kicking some academic ass.
Then there was a complete cognitive shutdown. It’s not clear, but it seems to have been caused by a medication. It lasted nearly four weeks.
I couldn’t read, write, or even speak normally. There was no way of knowing when it would abate. By Christmas, I was unable to leave my bed. But I was determined to continue. I registered for a couple of classes last spring. I would sleep during the 2 hours between the first and second class. If the underused lounge I found was occupied, I’d sleep in my car.
Again, I was still doing very well grade-wise. There were some moments when I thought of quitting. Twice, I couldn’t find my car. I always parked on a three-block stretch of the same street. On both of those scary evenings of confusion, after engaging the help of campus security to locate my car, my drive home was terrifying. If I walked past my car at least 10 times, should I really be driving?
Early March 2016:
“It must feel good to have an explanation.”
I’d found out two things. I’d been sick for years, getting worse and worse, trying medication after medication for the wrong illness. Second, somehow, none of the specialists I’d seen, despite my understanding, had tested me for an obvious source for my symptoms–Lyme disease. I had Lyme disease. OMG, I’d had Lyme disease for years…
I was told to expect antibiotic treatment. I was told that it would work and not necessarily affect the school. From what I had read (and what I now know), there is no medical consensus on what treatment to give, probably because no studies prove that any treatment works. The week and a half between getting the lab results and my appointment with a specialist were torture.
I was enraged. I was scared.
To maintain sanity, I drove my car a few blocks away every morning, blasted the radio and alternated between screaming and sobbing. Kind, concerned, people started sending me link after link. Credible sources about doctors needing heart transplants, people losing their eyesight, their ability to function. All because of long undiagnosed, untreated Lyme disease.
My various issues were no longer random.
The bacteria the tick bite introduces into the body is corkscrew shaped—perfectly suited to bore its way into organs, muscles, the brain. It wasn’t reassuring, I was more terrified that ever. In anticipation of needing time off from school, I spoke to my professors. Both were great, initially. One remains amazingly supportive.
I did improve for a week and a half around week four of the first round of antibiotics. Sadly, I relapsed. There were some hang-ups that kept me on the antibiotic that weren’t working much longer than preferable-mostly related to getting tested for allergies to other antibiotics. By the time I started on round two, I wasn’t just back to where I was in early March, I was significantly worse.
New symptoms. Different, daily migraines. My skin, often tender to the touch; walking, nearly impossible.
A month ago:
“…If it’s any consolation, you look great!”
Actually, no. It’s not consoling. And it’s no longer true.
My eyes are dull from the migraines, and even though I sleep, I have dark bags under my eyes.
My spine has become excruciatingly sensitive, I couldn’t sleep on my back because it can’t handle the pressure. I’m on week 25 of huge doses of antibiotics. (I’ve been doing a lot of adjunct therapies as well. To be frank, the massage therapist who’s been helping me is not only more attentive than my doctors, she’s also more knowledgeable.) The past three weeks have been particularly hard.
The brain scans that were ordered six weeks ago have yet to be pre-approved, I have about eight hours a day that I’m awake, four hours when I can read and concentrate. My eyesight is blurry, the migraines are unrelenting, and I can’t walk normally.
Not at all.
Singer, actor, Rhodes Scholar Kris Kristofferson’s story finally came out. He was also misdiagnosed with fibromyalgia… And Alzheimer’s. Yeah, I’m terrified. But what still isn’t lost is my determination. I magically finished the spring class this summer and rocked an A. It took all my super powers. I’m still catching up. I’m doing an independent study on Kierkegaard and taking an online class. I will not be stopped. Not by a tick and not by a slew of doctors who didn’t listen.
“Mommy, why is Bully’s mommy walking so funny? Did she turn into a robot-monster?
Bully is my dog. I’ve had to depend on my very kind dog walker to not only walk him but to feed him too. And the child is right on the mark, there’s no more normal-ish walking in me.
A few days ago:
“Oh God. I’m so sorry. Please, please, let me know if there’s anything I can do…”
Um, Can you help me unload the dishwasher? Or help me change the sheets? Take my recycling the 12 steps to the trash room? I’m sure this neighbor would, but I only ask a select few people for help with these tasks. I have a little pride left. My apartment is a wreck.
The only thing I’m focused on is getting into the Dean Lyme clinic at Spaulding Hospital in Boston. It seems like my best bet. Actually, it seems like one of the only options left.
The medical world has mostly ignored this illness, It’s not new. It’s not rare.
Thousands of people share my fate-–getting sick, staying sick, needlessly. Asking for help but remaining undiagnosed–for years. Fibromyalgia seems like the most common misdiagnosis. I’m not getting the level of help I need here. There is an astounding paucity of “Lyme-Literate” doctors in New York. Trust me, I’ve called nearly 50. Sadly, these days I’m more concerned with getting into clinics than starting graduate programs…
You don’t need to live in the Northeast to get bitten by a deer tick, they are everywhere.
There is a minute possibility that I got bacterially infested during a weekend trip to Vermont, but it probably happened here. The ticks are tiny, the size of a letter on a dime. Only 20-30% of people get the iconic bulls-eye rash.
In the span of a week in July, two of my neighbors found ticks on themselves. They did the smart thing: removed them correctly and saved them. This enabled them to take the ticks with them to the doctor. In this scenario, you’ll most probably be fine with a few weeks of prophylactic antibiotics.
The lab tests for Lyme are famously inaccurate. There are five kinds of tests. If you even suspect that you may possibly, just might, have Lyme disease, get tested at least three times. And via several methods. Don’t let a doctor short-change the need for repeated testing. Use bug spray.
If you’ve been diagnosed with anything get a second, third, fourth opinion. And always, always ask for a copy of the lab work.
If you’ve been diagnosed with fibromyalgia make sure you were not under-diagnosed.
Bear with me, I’m not belittling the illness. I’m just telling you to do what my bevy of doctors didn’t.
It is a “diagnosis of exclusion” which means a lot of doppelgänger illnesses are supposed to be ruled out. I learned that Lyme disease wasn’t the only possible explanation for my symptoms that was completely ignored. So was lupus, MS, and a lot of other autoimmune diseases. And get to a doctor who will listen.
Please, please, be your own advocate, even when you don’t think it’s necessary. Unfortunately, It’s always necessary.
So why is this post anonymous?
In big part, it has to do with why I fervently believe I went misdiagnosed for so many years, by so many doctors. I happen to have another diagnosis, bipolar disorder. I’m very grateful to be able to say that apart from a planned medication change, I’ve been almost symptom-free for seven years. Completely so for the last three. Other than doing what’s necessary to keep it that way, it no longer affects my life. But the label, the DSM code, those two words, has had a huge effect on my physical health.
They seemingly blinded every doctor I’ve seen for these symptoms—except for the Lyme specialist.
Fibromyalgia is a “comorbid” illness for just about every mental health diagnosis. So much so that these specialists took one look at my chart and didn’t even entertain the idea that my symptoms could be a result of anything else.
I have the reports. They all start with my name, gender, age, and “bipolar disorder.”
It was the doctor that gave me gave me the ability to want to live that said my back ache was some sort of tension. Why would I doubt him? He was the one who started treating me for fibromyalgia long before I saw any pain specialists, even longer before I was finally tested for all the other possible causes.
Why would I doubt him? He had never treated me with anything but respect. No pity, no doubts about what I was capable of achieving. The specialists I saw were referrals from this same doctor. Why would I doubt them?
I can’t possibly be the only one who’s gotten a faulty diagnosis by virtue of having another one that tends to co-exist.
If anyone knows of a documented reason that deer ticks purposely avoid people with mental health diagnoses, please do let me know.
Apart from being a large cause of my current situation, disclosing my label any more than I already have will affect my future goals. One would think my experience would make me more attractive to graduate programs, but I’ve been told to lay low by people I trust. My Facebook account needs editing, blog posts that I was so honored to be asked to write, deleted.
I’m saddened by the need for these sacrifices, but the stigma is real. And it’s become even more so now that it’s affected my health.
For more information on Lyme disease please visit the links below:
**If you would like to be a part of this series, please send an email with your story to firstname.lastname@example.org