Trigger warning: this post contains information and images related to medical care and medical symptoms that some people may find upsetting, including photos of bruises and hives.
This is so hard for me to write.
I’ve spent a lot of my life sick. And I’ve spent a lot of my life trying to pretend I’m not. Trying to deny it. And…. I can’t really do that anymore.
So here’s my story…
Once upon a time (and by that I mean 2005), I was 8 years old. I honestly can’t tell you much about my interests as an 8 year old, but I’m sure they were comparable to most. I’d say was your average 8 year old….. until suddenly, I wasn’t.
Suddenly, I was really sick. The kind of sick where I stopped being able to go to school, to leave the house, and eventually to even leave my bedroom.
There were heated whispers about hospitalization because I wasn’t able to eat, scary tests, scary words, a plastic trash can that I carried with me everywhere I went for months.
My medical records from that time paint a clear picture of what the doctors thought the root problem was: psychiatric issues.
And I definitely did have some serious psychiatric issues. Almost overnight, I developed severe panic disorder, OCD like symptoms, and agoraphobia. I went from normal and well adjusted to terrified to talk on the phone almost overnight. That doesn’t seem normal for a kid who previously showed no signs of mental health issues.
But I don’t have my medical degree. So.
My pediatricians never bothered to order even the most basic diagnostic tests, instead continuously recommending that my parents seek serious psychiatric treatment for me. Even when the psychiatrists came back telling them that they thought my problems were caused by an underlying bacteria (Lyme, specifically), this was seemingly ignored. They never even ran the test.
They had already made up their minds about what was wrong with me.
Eventually I started to get better, if “better” was qualified as being able to leave the house again, at least.
That year and a half seemed like something we all wanted to forget. My parents got rid of every photo that existed of me during that time, my haunted and sunken face too much for them to look at. I never really discussed it, only ever really bringing it up with the occasional offhanded “oh, I skipped 3rd grade.”
I was labeled better since I was able to leave my bedroom, return to school, and pass myself off as mostly normal.
The problem is that better is a relative term. I never really got better. I just learned to live with being sick.
For YEARS I kept having GI issues, headaches, joint pain, fatigue, lightheadedness, exercise intolerance, easy bruising, unexplained hives, sleep problems, and the list goes on and on. Doctors looked at me with skepticism, lots of “hm’s,” and kept adding on to the seemingly never ending list of diagnoses (some accurate, some ending up not so accurate at all).
OCD. Anxiety. Fibromyalgia. Migraines. Hypermobile Joints. CFS. A personality disorder. Asthma. Depression. Postural Orthostatic Tachycardia Syndrome (POTS). Food allergies. ADHD. And on and on and on….
They prescribed me medication after medication, rolling their eyes and telling me I must be anxious when I insisted that they were making me feel worse, not better. Insisting that that medication doesn’t have those side effects, wouldn’t cause any symptoms at such low doses, etc. I was told that I was fine so often that I started to believe it myself, too.
Maybe everyone felt this way. Maybe everyone had pain so bad it hurt to walk sometimes. Maybe everyone became so lightheaded and out of breath from one set of stairs that they had to sit down. Maybe everyone almost passed out in the shower sometimes.
Maybe I was just complaining too much.
Or maybe not.
Two months ago, I found out that I have chronic lyme disease and various other tick borne illnesses.
Since then I’ve learned that chronic lyme disease is something of a taboo phrase in the mainstream medical community, that political controversy and greed have found a way to overshadow patient care. The result is that hundreds of thousands of real people are left in the shadows, neglected by the medical community and unable to receive proper care.
Leaving countless other children sentenced to a lifetime of sickness, just like me.
About Chronic Lyme Disease
From what I can tell there doesn’t seem to be a huge consensus about chronic lyme, so it can often be referred to by other names including neurological lyme, late stage lyme disease, post treatment lyme disease (PTLD), and more. Truthfully, I don’t really care what you choose to call it.
The important thing to know is that untreated lyme disease and associated tick-borne diseases can affect any of the body’s systems and organs, leading to neurologic, cardiac, psychiatric, and/or arthritic symptoms and even death.
Patients who experience chronic lyme disease are essentially ignored by the medical community due to outdated and inaccurate guidelines for treatment from the Infectious Disease Society of America (IDSA) and the Centers for Disease Control (CDC).
However, research shows that Lyme disease can be the underlying cause of psychological symptoms, similar to the ones that I struggle(d) with.
One study found that 68% of Lyme patients experienced explosive anger, homicidal thoughts, and/or suicidal thoughts. Other studies have found that 54% of Lyme patients suffer from irritability or mood swings, 23% have anxiety, 21% experience depression, and 13% meet the criteria for obsessive compulsive disorder.
Once the bacteria is able to multiply and cross the blood brain barrier, symptoms can become neurological and psychiatric in nature. This is not a new concept and has been accepted by the medical community with infections related to other spirochetes such as syphilis for a very long time. Yet the people writing the guidelines for treatment continuously deny that Lyme disease, another spirochete, can be persistent in nature.
There are many reported Lyme-related psychiatric and neurological symptoms:
- Psychosis including hallucinations and delusions
- Emotional lability: rapid mood swings, episodes of rage, crying, reduced impulse control
- Suicidal thoughts and behavior
- Anxiety/Panic attacks
- Mood swings that may mimic bipolar disorder (manic-depression)
- Obsessive-compulsive disorder (OCD)
- Sleep Disorders
- An attention deficit/hyperactivity disorder (ADD/ADHD)-like syndrome
- Autism-like syndrome
- A progressive dementia
In addition to psychological impacts that are biological in nature, there are additional mental health impacts that stem from indirect causes such as treatment from society and the medical community.
I spent years screaming into an empty void, begging for help, and no one listened. I was a child when I first became sick. I didn’t even have the mental capacity to understand what was happening to me, let alone search for the answers on my own.
IgeneX, a leading lab and researcher in lyme disease and other tick borne illnesses, writes that,
“Getting diagnosed and treated for Lyme disease can be stressful and exhausting, especially the longer this process takes – which, for many, can be several years. Patients often must deal with conflicting or inaccurate diagnoses, lack of support from health care professionals, and exorbitant medical bills, all while battling physically and mentally debilitating symptoms with no end in sight. This experience can lead to a drastic reduction in quality of life that creates the perfect conditions for mental illness.”
Instead of helping me, our medical system failed me. Instead of trying to figure out what was wrong with me, doctors blamed me.
The Infectious Disease Society of America (IDSA) links to sources on their web page about treating Lyme that state that, “The symptoms will fade, even if untreated.” This is flat out ridiculous, and it denies science and the international research and guidelines on treating Lyme and related co-infections.
We have created a system where hundreds of thousands of people can be dismissed for years, allowing their symptoms and illnesses to get worse and worse until they finally incapacitate them.
Getting to a Diagnosis
Looking back, I can almost pinpoint the exact moment things spiraled fully out of control. Starting in late September 2019, on a trip to Texas, it was like I watched from the sidelines as I lost whatever parts of myself were holding on, though I wouldn’t know for months what had really happened.
By the point that I would discover that Lyme and co-infections were causing my problems, the damage had already been done.
Here are the things I remember:
I remember laying in a hammock, surrounded by warm Texas air and staring up at a clear night sky filled with stars. As I laid there, acutely aware of at least 4 people rocking silently nearby, I found myself paralyzed by this overwhelming feeling that I was losing my mind.
I remember laying on the floor in the hallway of the hotel sobbing, too ashamed to do it in my own room and risk disrupting my roommates.
I remember my emotions flying all over the place, oscillating from happy to rageful to hopeless to blank in a matter of minutes.
I remember the rage that would come out of nowhere, sending adrenaline pumping through my body.
I remember throwing my phone at a wall one day in a fit of rage, and being lucky that my aim sucked and it hit the carpet instead.
I remember feeling hollow, empty, tired. I knew that something wasn’t right, but I couldn’t tell you what. I guess I still can’t.
It felt like something within me finally had too much, and my body and my brain were punishing me for it.
I barely remember anything from the months after that.
That’s a hard thing to explain. A hard thing to write out and admit. It doesn’t seem like it is something that could really happen.
I know that I kept going to class, graduated, got a job. Big picture moments.
But no matter how hard I try… I can’t remember the details. It’s almost as if I’m repeating a story that someone else told me about instead of one I lived myself.
I can tell you that I started to lose friends as my mood swings were becoming more apparent. I lost my best friend, someone who I thought would be in my life forever. I decided to suddenly quit my officer position in my student professional organization, a position that meant the world to me. I quit my internship one day. I lost my relationship.
But I can’t actually remember most of it. My life fell apart and I can’t even tell you what the fuck happened.
And that’s just….. really hard. I don’t have advice. I don’t have some silver bullet – “here’s how you fix your life after a bacteria invades your brain and makes you go crazy!”
I’m angry, I’m disappointed, but mostly I’m sad. I’m sad that this is what it had to come to for a doctor to finally even order a fucking diagnostic test. I’m sad that my life had to crumble before anyone bothered to believe me or to help me. I’m sad that so many years of my life were wasted.
I’m sad that this illness has now progressed to the point where I have started to have trouble remembering my own phone number – a number that I’ve had since I was 7- and yet there are STILL doctors who say that I am just making this all up (what? for fun???).
It makes me sad that the people in charge of writing the guidelines for treating this illness assert that absolutely nothing is wrong with me, swear up and down that lyme is only an acute illness and does not cause any long term damage. That they will die on that hill for greed and deny the suffering of so many real people.
I’m sad about all of the people who I have lost from my life, all of the people who were driven away by my symptoms. It makes me sad that I inadvertently hurt them. I think about how the pain caused by this disease has radiated outward so far, reaching much further than the patients themselves. It is impossible to measure the depth of the anguish caused.
I’ve had this post sitting in my drafts for a week because I couldn’t figure out how to end it. I’ve felt this pressure to find the “silver lining” in all of this, and truthfully I can’t. There is no silver lining, at least not today.
This is the only conclusion I can come up with: this shouldn’t fucking happen. No one should be forced to suffer the way Lyme patients have had to suffer. The way the doctors treating them have had to suffer, living in fear of losing their livelihoods. The way their loved ones have had to suffer, watching the person they once knew dissipate right in front of them.
There are no excuses for it, there is nothing that will make up for it. History will look back on this in shame.
I have a very long road ahead of me as I will begin treatment, and I’m not exactly sure what that will bring. While that is absolutely terrifying, for now I am trying to take things one day at a time.