As someone with a chronic illness that was once misdiagnosed as a psychiatric disorder, but who also does have mental health issues, it’s a constant balancing act trying to understand my brain while convincing doctors that mental illness is only one of my problems.
For eight years, the conclusion was that I was sick because I was depressed. (Since when did depression cause visible joint inflammation?) Even as a kid, I knew better than to believe that.
I was only thirteen the first time a doctor misattributed my physical illness to my poor mental health, but I knew that I knew myself and my body better than a doctor who’d just met me:
“I’m not sick because I’m depressed,” I growled. “I’m depressed because I’m sick.”
For eight years, this was my battle cry as doctor after doctor insisted there was no medical cause for my symptoms. No one believed me. No one listened. I went to therapist after therapist, and nothing significantly helped my depression, ADD, sleep problems, or fatigue.
Was I mentally ill? Absolutely, but…
There was even more to it than that: at nineteen years old, I’d finally find out there was inflammation in my brain from an autoimmune condition called PANS. It was all in my head, but not in the way anyone had imagined.
And later, I’d learn I’d probably had untreated Lyme for much of my life, wreaking havoc on the rest of my body in addition to what PANS did to my brain.
[Trigger warning: brief mentions of suicide.]
Indeed, in people with Lyme disease, depression is rampant, and suicide is the number one cause of death. Some of this might be due to inflammation in the brain altering function in a manner that leads to depression (as in PANS), but just as much may be a consequence of facing debilitating symptoms day in and day out.
In one study, 69% of Lyme patients had experienced suicidal thoughts during the course of their illness. As alarming as this is, it’s hardly surprising when Lyme leaves us in constant pain, destroys careers and marriages, and confines victims to homes and beds—all while doctors tell many of us there’s nothing to be done and that none of it would be happening if we didn’t have mental health problems.
Psychosomatic illness, where mental illness manifests in medically inexplicable symptoms, is a real phenomenon, but it’s simply not the cause of chronic Lyme, as some doctors still believe. We’re depressed because we’re sick—not sick because we’re depressed.
And five years after being correctly diagnosed with PANS, and after being treated for Lyme, I’ve now endured countless medical treatments for PANS like antibiotics, steroids, IVIG, and a tonsillectomy, and now I’m recovered and living my best life—a life I once would’ve imagined impossible before I was diagnosed. Even so, my relationship with my mental health and my physical illnesses is just as complicated and messy as ever.
There are still new doctors who come along and insist my response to all those treatments was placebo effect—that I’m simply in denial of my mental illness and trying to avoid psychiatry and therapy. (These are the same doctors that say I can’t have PANS because I’m an adult and think a couple of weeks of antibiotics always cure Lyme.)
These people couldn’t be more wrong about me if they tried.
Despite all of the evidence pointing to brain inflammation being the culprit of the worst, most intractable psychiatric and neurological symptoms I once experienced before medical treatments, I do continue to get psychiatric care as well. I still to go to one-on-one therapy, see a psychiatrist once a month, and take three psychotropic medications (though I’m so stable I’m trying to taper off). I am, by all definitions, a mental health patient, and I’ve never denied it.
I didn’t seek treatment for PANS and Lyme as a way to avoid the mental health system—the reality is that I’ve needed both in order to successfully manage everything that has happened to me and my brain.
Nevertheless, it’s complicated using mental healthcare when my autoimmune disease also manifests with psychiatric symptoms. My psychiatrist isn’t just asking me about my OCD and monitoring my medications—he’s also looking out for signs of PANS relapse. On multiple occasions, he’s stepped back and said I need to get to my neurologist to see about more PANS treatment. I can’t just see any psychiatrist because of how my chronic illness can be confused for mental health problems. (But I hope all psychiatrists will be this aware of PANS someday.)
In my case, I know sudden severe anxiety and thoughts of suicide with no trigger are not a sign that I need more psych meds but that I need a round of IV steroids—a treatment normally considered dangerous for depressed psychiatric patients. I know no amount of therapy or medication will quench the inflammation in my brain when in a true PANS flare—it’d be like throwing a pail of water on a forest fire. I know how I’ve come back from the darkest places after autoimmune treatments time and time again.
But on the other hand, I know I also have mental health issues. There was a time I had to spend a couple of months in intensive outpatient therapy for an eating disorder we all knew had nothing to do with brain inflammation anymore. There have also been times when I’ve crashed into a depressive episode from life-stressors and the pressures of academia, and we all knew no amount of steroids would do any good for that.
And yet too many doctors act like you can either have a physical illness or a mental illness—you couldn’t possibly have both.
There are some who look at a young woman with OCD who takes psych meds and assume my other health concerns aren’t based in reality. There are some who simply don’t want to be bothered to understand that it’s not just a mind-body connection, where mental illness can cause physical symptoms—the body-mind connection is just as strong, if not more so.
Over the last few years, I’ve come to realize that just because my physical illness affects the brain in such a way as to cause primarily psychiatric symptoms doesn’t make me immune to “normal” mental health problems. If only! In fact, it seems to me that my illness has only made me more susceptible to them.
Think of it this way: when a person is diagnosed with cancer, an illness everyone knows is completely physical in nature, many hospitals assign the patient a social worker to help them process such a traumatic time. No one with any sense would think a physical disease like cancer would preclude someone from struggling with their mental health—doctors and therapists know it’s a time to look after mental well-being more than ever.
Likewise, it’s been an ongoing challenge to not let the nightmarish experience of living with PANS and Lyme ruin my mental health—the fact the symptoms of PANS and Lyme overlap with mental illness is immaterial in this regard, though it can sometimes be hard to discern which one is causing my depression or anxiety.
PANS and Lyme are both traumatic, and you’re kidding yourself if you think they can’t affect your mental well-being.
I’ve seen lots of talk online about PANS parents getting PTSD (a very real problem that deserves the discussion), but why does no one seem to think about what it does to the person who has PANS themselves? (I do hope the young kids who get it don’t understand it enough to have lasting effects.)
As I’ve gotten better, you might think I’d just be happy and celebrating, but regaining cognitive and emotional capacity was when I was finally well enough to comprehend the full horrors of what had taken place. Ironically, being less miserable from symptoms was what allowed me to feel pain I couldn’t feel before. That’s when the nightmares came, the grief and anger kicked in, and I found myself trying to grasp what happened and clean up the damage from a life shattered into a million pieces.
There was no way I was going to escape PANS unscathed.
It’s a continual struggle, particularly as I heal, to not sink into despair over what I went through, and still go through because the Lyme brought on an immune deficiency and dysautonomia that I have to manage with monthly IVIG infusions. It took a long time for me to be willing to try to live while the distant threat of relapse hung over my head. I used to feel like there was no point in trying to make something of myself because I could lose all progress if I got sick again.
But therapy has helped me be able to have dreams for my future again, rather than only doing what’s in front of me and avoiding getting my hopes up. It’s helped to quiet the insinuating whisper in the back of my mind that says I’ll always be too sick for my life to amount to anything.
However, my mental health isn’t just a challenge because of the trauma of my disease and my wrestling with how to move forward—after this many years and some of the best and most aggressive treatments there are for PANS, I’ve had to realize something important, yet hard to swallow:
I’m always going to have some OCD, ADD, and anxiety issues independent of brain inflammation.
All of my specialists agree on this, especially since those issues affect some of my family members who don’t have PANS or Lyme. To what extent I was born with the tendencies versus this being the result of years of untreated PANS and getting stuck in those neural patterns is unknown. But that’s why therapy (especially CBT/ERP) is often recommended once the disease is under control if someone has lingering OCD. It’s similar to how a person with a brain injury often needs to do rehab—the injury is over, but they may need help healing the damage.
But it’s important to note therapy requires the mental and emotional capacity to apply the recommended techniques and exercises—something not always possible with PANS raging on untreated. This is why, despite how much therapy has helped me cope with everything I deal with, I’ll be the first one to say you can’t cure PANS with it—no amount of talk or Prozac will stop the immune system from attacking the brain like it does in a PANS flare. Therapy and psych meds are to PANS what a wheelchair is to someone with limited mobility—a potentially helpful tool but not a cure.
I used to think I’d know I was cured from PANS when I stopped all my psych meds and stopped needing therapy and stopped showing any signs of mental illness. Maybe some people experience that with full recovery, but as time has gone on I’ve realized it’s not always so simple.
It turns out healing a brain from inflammation and the heart from the emotional consequences of chronic illness is a complicated, messy process. Physical health and mental health are inextricable, and it’s important to acknowledge how much they can influence each other, and that the connection goes both ways. As the saying goes, it’s okay to not be okay.
You don’t have to pretend to be strong and brave when fighting a chronic disease—there’s no shame in being honest with yourself and admitting when you need help with your mental health as well.