What Mental Health Awareness Means When Chronically Ill

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.

Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

Today is World Encephalitis Day, and I want to take a moment to shed some light on a certain controversy within the PANS and encephalitis communities:

Is PANS a form of autoimmune encephalitis, or is it something else?

Back in 2014, in a matter of weeks, I went from being a typical college student earning straight-A’s to a psychiatric cripple who was afraid to eat and didn’t want to exist anymore.  I also lost the ability to walk, was overcome with constant involuntary movements, and couldn’t stay awake for more than a few minutes at a time.

How could a person develop sudden-onset Tourette’s, narcolepsy, bipolar symptoms, and severe coordination problems simultaneously in isolation from each other? 

So after weeks of bouncing from doctor to doctor, I was diagnosed with autoimmune encephalitis (AE).  My immune system had mistakenly attacked part of my brain instead of the Strep and mono that I’d recently caught.  The rogue antibodies went after my dopamine receptors and lead to symptoms that mimicked mental illness.

Since my diagnosis, I’ve endured eighteen rounds of IVIG and month after month of steroids which have put my symptoms into remission far more effectively than any medication intended to treat the seven individual diagnoses I’d received: Depression, Anxiety, Obsessive-Compulsive Disorder, Anorexia, Tourette’s Syndrome, Narcolepsy, and Periodic Limb Movement Disorder.

The immune-based treatments I underwent took me from being a shell of my former self when my disease was at its worst, to a functional full-time grad student holding down an assistantship today.

But there’s a problem: the AE doctors don’t believe me—and they’ve all been doctors practicing at reputable academic hospitalsThey don’t think my condition is real because it doesn’t show up on the combination of tests used to diagnose other known forms of AE.  They’d rather label me with Bipolar Disorder or Psychotic Depression and drug me for the rest of my life with medications that have never touched my symptoms.

The trouble is that mine is a particular kind of AE called PANS, which many mainstream autoimmune encephalitis doctors do not consider a form of AE.  For too many specialists (though thankfully not all), it seems that if it doesn’t fit into their neat diagnostic boxes and pre-conceived notions, then it’s not worth their time to figure out.  I’d like to think that any informed doctor would at least know by now that PANS is a real condition, whether or not it’s AE, but sadly this hasn’t always been the case.

So on top of debilitating symptoms, I’ve not only had to fight to get better, but I’ve had to fight to find doctors who acknowledge that my disease even exists.

And the sad thing is that this is true for nearly everyone who has PANS.  The dogma is that if you don’t have a kind of autoimmune encephalitis that medicine knows how to test for, then your symptoms must be behavioral or psychological.

A while back, I got a full autoimmune encephalitis workup just to be sure I hadn’t had a different form of AE for all that time. I hoped it could reveal why my case has been so persistent.  I endured an EEG, epilepsy-protocol MRI, extensive blood work, and a spinal tap in the hopes of gaining insight into the symptoms that have plagued me for years.  But guess what happened?

Nothing in my results showed any evidence of brain inflammation. 

According to the “AE expert” I saw, I don’t have autoimmune encephalitis, and I should never have had IVIG or steroids. This person also informed me that I couldn’t have PANS because I’m not “pediatric”—an assertion with no basis in the current understanding of PANS.

Truth be told, it wasn’t until now that I’ve been able to recover from the gas-lighting I endured at the hands of this doctor.  I was so confused and angry that I began to wonder if I really am just another psychiatric patient—what if five years of successful treatments with steroids and IVIG were nothing more than placebo effect?  What if this doctor was right?

But on this World Encephalitis Day, I’m going to throw a grenade into the rigidity and bias that plague too many autoimmune encephalitis doctors, impede scientific progress, and prevent everyone like me from receiving their help:

You don’t know everything about the brain and the immune system.  You don’t have a monopoly on inflammation causing mental illness.  You can’t test for every medical condition that can affect the mind.

The reality is that mental illness is a symptom of a physical illness that science doesn’t yet know how to quantify.  The mind doesn’t exist outside the brain, and the brain doesn’t function without the body.  Even emotional trauma has been shown to alter brain structures, so an argument could be made that all mental illness is ultimately physical in some way.

Many doctors readily believe in the mind-body connection, in which mental illness can lead to physical symptoms, but have their heads in the sand when it comes to the body-mind connection.  It’s preposterous to espouse autoimmune encephalitis as the only condition where the immune system affects the brain and results in psychiatric symptoms.

And why do doctors accept that elderly people can lose their minds when they get an infection, but when a kid gets Strep and suddenly flies off the rails it’s just a coincidence?  Why could infection only trigger neuropsychiatric symptoms in older adults?  Why aren’t younger people’s sudden mental illnesses suspected as having an infectious cause like they would be in your grandmother?

Therefore, labeling people with PANS who don’t show signs of “classic” autoimmune encephalitis as mentally ill is nothing more than a biased cop-out.

The truth that no one is willing to accept is that there is more medical evidence that PANS/PANDAS exists than any mental illness.  Have you ever heard of a patient getting a blood test to figure out whether or not they have depression?  Imagine the (rightful) outrage if someone with severe depression was told their condition wasn’t real just because their blood work was normal!

Every psychiatric diagnosis is made only through observation and/or a clinical interview, yet mental illness is widely accepted as real and valid, as it absolutely should be.  And yet PANS, another clinical diagnosis, is not.

If the AE doctors are going to dismiss PANS on the grounds of it not showing up on medical tests, then by that logic they ought to do the same for all mental illnesses.  But somehow it’s common knowledge that mental illness is as real and devastating as any other medical condition. 

Why isn’t PANS just as accepted?

When there are thousands of people like me whose “psychiatric” symptoms are proven to correlate with infections and a weak immune system, as shown in blood tests—and who improve with antibiotics, steroids, and IVIG, time and time again—it is bad science to dismiss the physical evidence in exchange for psychiatric diagnoses with no known biomarkers. 

Moreover, for those of us with PANS, psychiatric treatments often make our condition worse or simply don’t work.  I dare you to find a single person who would rather endure invasive procedures like IVIG instead of the psychotherapy that tends to help many psychiatric illnesses.  No one wants to travel hundreds of miles to PANS experts and pay out of pocket for treatment when, in most cases, there are local mental health services covered by insurance.

And in reality, the majority of people with PANS do try therapy and/or psychotropic medications, and though they can be good tools for some, they don’t do enough to bring us back to health. We have a physical, immune-related illness, so we have no choice but to go through the back doors of the medical system to treat the root cause.

So is PANS a form of AE, or is it not?

It may very well be that PANS is sometimes a kind of autoimmune encephalitis that doesn’t show up on the standard AE tests currently used—after all, most AE experts readily admit there are plenty of autoimmune antibodies we can’t yet identify.  Or maybe in other cases PANS is something very similar but better classified as separate from AE.  Either way, I suspect “PANS” is a term that encompasses what we’ll someday discover are multiple related diseases—and that AE will turn out to be far more common than anyone thought. 

But one thing is for sure: just because something doesn’t look like the most widely accepted, present-day definition of AE doesn’t mean it’s psychological! 

In fact, PANDAS Physician’s Network says that other kinds of AE must be ruled out to diagnose PANS/PANDAS, so normal AE tests can never exclude it.

This World Encephalitis Day, I hope that both people with accepted forms of AE and people with PANS/PANDAS will get the help they need.  I want everyone to know how devastating AE and PANS can both be—and to realize that some cases of psychiatric illness have a treatable, immune-related cause, whether it’s PANS or AE or something else.

If you or someone you know has a mental health diagnosis and worsened symptoms whenever they have an infection, or if they developed mental illness out of nowhere, it just might be PANS or some other kind of encephalitis.  Please read more about these conditions here:

Science is only in its infancy in understanding how the immune system can affect the brain and cause psychiatric symptoms in PANS, AE, and other medical illnesses.  We need more research on encephalitis of all kinds, and for the AE and PANS communities to come together to work towards finding a cure for all.


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Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?

Last month, after finishing my first semester of grad school, the dread of having to come back in January to do it all over again drowned out any sense of accomplishment.  Although I liked my colleagues, the truth is that I was miserable so much of that fall.  And until now, I didn’t know why.

Continue reading “Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?”

How I Tackle Grad School with Cognitive Problems from PANS

“How’s grad school going?” my friend from home asked.

“I mean—I’m glad I’m trying it,” I stammered, going on about a few highlights.

“But do you like it?” she pressed.

The truth is that I’d been afraid to ask myself this very question, because I was afraid to learn the answer….

But first, how is grad school going?

Continue reading “How I Tackle Grad School with Cognitive Problems from PANS”

Why Failing in Grad School Proves I’m Doing Great

“You need to get yourself together,” my professor warned, staring at me with utmost concern.  “You have to do better than this if you want a career.”

The words stung and burned into the darkest recesses of my mind, not because I was taken aback, but because I knew on some level they were true.  They were the doubts that nearly kept me from applying to grad school in the first place, and the soundtrack to every moment when I’ve wondered if I should even be in this field.

Maybe I’d made a huge mistake after all.

When people ask how I’m doing lately, I have no idea what to say.  On the one hand, I’m successfully living on my own again, and my PANS symptoms are 95% better.  On the other, I’m easily the least effective graduate student in my group.

I feel like I’m the runt of the litter, when my professors thought they were hiring a pure-bred show dog.  My undergraduate mentors apparently wrote glowing recommendation letters, but now that I’m here, I’m barely meeting these new professors’ demands.

After that conversation with my professor, I was utterly deflated.  I’d been on the verge of a breakthrough, excited to find where it would lead, but now I wanted nothing to do with my work.  I went home and cried, longing for the days at my old school when my professors understood me so well and always gave me the encouragement I needed.

I tried taking a walk around campus, I tried calling my parents to vent, and I even tried going out with a friend that night.  But nothing could lift the storm cloud that was now enveloping me.

IMG_6013That familiar depression—the monster I’ve fought for over half my life—had suddenly crept back in to eat me alive.  This was always how it began.  I’d been on such a long streak without a full-blown episode, but here it was to taunt me all over again…

I couldn’t leave my room the next day.  I spent the following day alternating between crying and scrolling through Twitter (but not tweeting anything because I was too exhausted to think of anything to say).  I eventually went to the lab to attempt some work, but just looking at it brought on a panic attack, so I gave up.

Let’s just say that I felt utterly pathetic and unsure why in the world I ever imagined I was cut out for grad school.

The problem with having PANS is that every time I have a bad mood or get extra anxious, I worry that I’m relapsing.  The disease attacks the brain, so the symptoms are psychiatric and neurological ones like depression, anxiety, OCD, involuntary movements, and too many others to name.  It can be easy to mistake it for “garden-variety” mental illness, especially in the early stages.

And for me, most of my PANS flares start with sudden, severe depression similar to what I experienced last weekend.  I’d also been getting other symptoms in the days leading up, like more difficulty sleeping and even some tics, which often proceed my flares, too.

Was this going to be like every school year in my undergraduate career, cursed with a major relapse at some point?

But then came Sunday.

As difficult as it was to make myself do anything, since I was being far more unproductive than usual I forced myself to get in the car and leave town for an afternoon.  I had so much work hanging over my head, but I needed to get away from it all just for a bit.

And you know what happened?

The darkness lifted. 

SunriseI felt like myself again by the time I returned to campus.  I got a renewed fire in me to prove everyone wrong—to prove that I really can do a strong thesis and have a solid career.  So I went home and got back to work.

Although the fear that I’ll never be good enough still stings, I’ve realized that something incredible happened because of that meeting with my professor: I had a somewhat “normal” response to a painful situation—the depression I experienced wasn’t from my brain being inflamed like it is in a true PANS episode.

It turns out recovery is complicated.

Many people think that recovery from PANS means a person has no mental health issues anymore, nor anything that could remotely be mistaken as a symptom.  Perhaps there are cases like that, particularly if they were caught early and treated promptly, but I think this is too idealistic an expectation for a lot of us who went years without care.

Even if my depression and anxiety were initially caused by an autoimmune attack (PANS) years ago, it seems to me that because the disease taught my brain those maladaptive patterns for so many years, it still takes less of an emotional trigger to send me back into them now—but now my problem has become psychological rather than autoimmune. 

It’s not surprising at all that I fell so hard and so fast into depression after what happened the other week—but the fact that a day out rather than more antibiotics or steroids broke through the darkness proves it had nothing to do with my disease this time.  I’m just a struggling grad student now, and no amount of Prednisone can fix that.

At this point, a year since I re-started treatment following a catastrophic PANS relapse that left me as a shell of my former self, I dare say that for all practical purposes, I’m better… 

But “better” is a tricky concept to define when you’re talking about a condition that attacks the brain, changes your personality, and forces you to relearn every aspect of normalcy.  Better doesn’t mean you don’t have any kinds of problems.

The reality is that I’ve just spent an entire year living at home and focusing on nothing but healing my brain—and for all I know, it’s still healing since the ability to stay on task and manage time can be one of the last things to improve.  Either way, though, it’s no surprise that being on my own and starting full-time grad school all of a sudden has been so jarring.  No wonder I’m having a hard time, since I’m coming from a vastly different world than all of my healthy peers fresh out of undergrad.

When you’re going back to school after a serious illness, you have to be patient with yourself and give yourself credit for showing up—even when others say you’re not doing a good job.  Don’t listen to them—you’re doing a fantastic job living the best life you can given the circumstances.

If you’re like me, you might be ready to go full-speed and leave the sick days behind, but it takes time to relearn your limits and adjust to a new life.  I’m learning that, no matter what anyone says, I have to be patient and kind to myself.

I’m happy to say that things are starting to improve since that conversation with my professor, and I’m beginning to find my footing.

No, I’m not the most efficient worker, and perhaps by those standards, I’m still a runt.  But you know what?  Sometimes the runts grow up to be the best dogs because of their differences.

So these days, I’m standing tall, and I’m proud of what I’m doing…  I hope others will soon be, too.


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P.S.: I’m tentatively going to appear on national talk radio next week for PANDAS Awareness Day on October 9th.  Stay tuned for more details on when/how to listen! 

10 Ways to Feel Less Hopeless When Chronically Ill

“I just can’t keep going.”

“I feel completely hopeless.” 

“How can anyone live like this?”

These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.

Continue reading “10 Ways to Feel Less Hopeless When Chronically Ill”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…

After eleven years of brain-related chronic illness, I’ve come to live in a constant state of uncertainty not only regarding my conditions, but regarding my entire life.

I never imagined I would ever get sick in the first place, let alone to then be sick for over a decade. The fact that my illness happened at all has taught me that no matter how certain you feel about your life, you can’t really know what the future holds. Continue reading “My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…”