What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS

“There’s no cure.  No one knows if you’ll ever get better.”

The realities of my situation swirled in my mind as I tried to make sense out of what was happening.  None of it was news, but somehow the word hit me harder than ever before:

Encephalomyelitis

“With the encephalomyelitis…” my doctor began at a recent check-up, but I have no idea what came after, because that word was all I could hear.

Continue reading “What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS”

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.

The One Thing That May Never Recover After My Chronic Illness

With Easter Week and Passover upon us, I’ve found myself face to face with the very thing my chronic illness has changed the most: my faith.

For years, I would’ve told you it was the most important thing in my life.  All through high school, I was a leader in my youth group and involved in several ministries.  I used to read scriptures daily because I wanted to learn more about God.  I used to pray often because I wanted to be closer to Him.  I even used to be enthralled by dense theological tomes, started to teach myself biblical Greek, and at one point considered going into ministry full-time.

But then I got ill.

At seventeen, I suddenly developed an extreme case of OCD. I’d already had OCD smoldering in the background of my mind for six years, which I’d concealed from numerous therapists due to shame, but out of nowhere it became incapacitating and all-consuming.

The kind of OCD I had was “pure-O” OCD, which involves repeated unwanted thoughts and invisible mental compulsions. And because OCD tends to go after things you care about, for me it mainly took the form of constant blasphemous intrusive thoughts that I found appalling, and mental compulsions to “cancel” them.

The thoughts would pop into my head in an unending cacophony from the time I got up to the time I slept (if I was lucky enough to sleep), forcing me into a perpetual panic over whether or not I’d carried out the neutralizing compulsions or not.  I thought if I didn’t do my compulsions correctly I’d be committing an unforgivable sin.

The mental anguish of my extreme OCD was indescribable.  It was all of the worst feelings possible all at once: a despair so dark that you feel like you’ve swallowed all of hell inside of you, and a terror that makes you want to run and scream and hide from your own mind.  But you can’t escape it—you can only hope that somehow you can endure it.

It’s been six years since I lived in this OCD agony, but the white-hot pain of a brain turned against itself is forever burned into my memory.

In fact, it’s one reason my faith is so hard to hold onto anymore.

I suffered through debilitating OCD for several months until I got through intensive Exposure-Response Prevention therapy.  I’d need several more posts to discuss that process in-depth, but I’ll sum it up by saying that it helped me get my mind back—that, and learning to separate what was my OCD versus something that I actually believed in spiritually.  It was like a revelation when I found out I had a treatable mental illness and wasn’t a terrible or crazy person.

My faith set me up for religious OCD, but it was also my faith that got me out of it. I leaned into it like never before in order to separate out the lies of my disorder from the truth.  Not surprisingly, during the ordeal, I would’ve told you that my faith grew stronger than ever despite the constant persecution from my own brain.

But unfortunately, my struggles didn’t end there—extreme OCD was only the beginning of a litany of neurological and psychiatric problems that would ensue.  As it turned out, my sudden OCD was caused by an infection-triggered autoimmune reaction in my brain called PANS, so treating the psychiatric symptoms with therapy did nothing to stop the physical disease from destroying me.

Less than two years later, PANS reared its ugly head again in new, unthinkable ways. I suddenly developed tics and involuntary movements all over my body that were as invasive and constant as the intrusive thoughts had once been.  I lost the ability to walk.  I became afraid of food and stopped eating.  I dozed in and out of consciousness all day long, no matter how much I slept at night.  I became suicidal to the point I was watched 24/7.  Most of all, I lost my personality and everything I’d thought defined me…

And what was left of my faith by then began to shatter.

Thanks to my parents helping me get a diagnosis of PANS and treatment with IVIG, my symptoms improved over the next few months, but my faith only weakened as I regained the cognitive skills that allowed me to finally process what had happened.

That’s the paradox of recovering from PANS—when I’m at my worst I’m too mentally impaired to understand the full horror of my illness.  I’m certainly aware how miserable I am, but I lack the insight necessary to realize the full extent of the damage to my life—or I’m too depressed at that point to care.  But as I get better, the reality sinks in, and I can truly grieve everything that PANS has stolen.

It’s no wonder my faith got worse as I got better.  It was only as I got well that I regained enough intellectual capacity to realize I could no longer reconcile a loving God with the level of suffering people with PANS and OCD and any number of other things endure.  Yet my continuing to believe in a God I’m mad at is fraught with existential conflict.

A few months into treatment, as I was talking to someone at church about how much my condition had improved, he told me I had a great testimony of God’s healing.  I smiled and nodded, trying to believe it, but the reality was that the whole nightmare had left me wondering if God even existed at all.

Some people have a faulty expectation for those of us who have been through a hell they can’t imagine—they think of us as super-saints that have come out of purgatory, stronger in conviction than ever.  For some, this may be the case, but for others, our trials leave us wondering if we believe in anything at all. 

We’re left spiritually broken and in need of people to surround us, free from presumptions and trite sayings, showing us with their actions the love of God that we once knew so clearly.

Today, it’s been three years since I went to church regularly—at times because I’ve been too physically ill, but at others because it reminds me too much of my mental illness.

I now see that a lot of my fixation on spiritually for all those years, even before my OCD got extreme, was wrapped up in my OCD in an unhealthy, obsessive need to be sure I was a good person.  For me, spirituality wasn’t always the source of comfort that many people experience it as—sometimes it was an involuntary way for me to quell an ever-present worry that I wasn’t good enough.  But now that I know what OCD is, I have to reckon with how I could practice my faith without falling into those same traps.

I do miss being part of a community and feeling connected to something bigger than myself, but the memories of having religious OCD have made me associate religion with the pain it once caused.  There have been days when all it takes is for me to open a Bible to trigger sobbing and panic.  Even though I believe in something, I avoid thinking about it because I’m sure the minute I try to get close to God I’ll end up in OCD hell all over again—and I still have anger about all of it buried deep down.

The ERP therapy got rid of my OCD, but until recently I never had therapy to deal with the trauma of having such horrible illnesses barge into my life out of nowhere and tear me to the core—I will likely be dealing with the emotional fallout for years to come as a result.  And it could be even longer before I’m able to forgive God for allowing the whole ordeal to happen in the first place—not just to me but to hundreds of thousands of others.

Ultimately, the way I made some peace with what I’ve been through was to accept that there was no inherent meaning to it, and no deity brought it about—bad things simply happen at random to both good and bad people every day as a consequence of the world we live in.  But it is always my choice whether I feel sorry for myself or try to make something good come out of it.  For some reason seven billion of us are stuck to struggle along on this tiny planet, and I figure the best I can do is use my experiences to help others while I’m here.

I haven’t figured out where, if anywhere, this fits into believing in God, but the reality is that no one has made sense of the human condition—if they think they have, they’re fooling themselves.  I would argue that, by definition, faith must be something that has no concrete proof, or else you wouldn’t need “faith” to believe it’s true—and it is therefore expected that you’ll never answer all of your burning philosophical questions in this life.

As time has gone on, living with chronic illness has taught me to accept uncertainty and unfairness as normal parts of existence, so I’m finally getting to a point where I’m willing to seek out spirituality again.  And this Sunday, I may actually set foot in a sanctuary once more.

Nevertheless, after living with PANS and OCD, I’ve seen too much to take everything at face value with simple faith as I once did—but I’ve also seen too much to give up on a higher power completely. 

I used to wish my faith could go back to what it was to me before I got sick, but now I’ve realized that would be impossible.  People change.  Life happens.  Perspectives shift.  But the beauty of faith lies precisely in the possibility that, whatever chaos befalls, its timeless, ancient wisdom can be adapted and rediscovered in new ways again and again and again—belief was never meant to be a static endeavor.

No, I’ll never recover my faith to what it was before my OCD and PANS, but I don’t have to—it’s okay that it will have evolved, and I still hold out hope that after the mess of the last six years of illness, there is yet peace and meaning to be found for the future.


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The Plot Twist I Never Expected… And How I’ve Learned to Accept It

After just one stride, I knew something wasn’t right.  I’d always run through anything—be it sickness, rain, or depression—but today was different.  Today, in the midst of training for my second half-marathon, my whole body felt like it was made of lead, and no matter how hard I tried I could barely pick up my legs.

I shuffled down the road for two miles before the frustration of a terrible performance got the best of me, and I dragged myself home, now dizzy from exhaustion. I went to bed in the hopes that I could sleep it off… Continue reading “The Plot Twist I Never Expected… And How I’ve Learned to Accept It”

In Response to Your Lyme Questions…

Ever since I announced my Lyme diagnosis, I’ve been inundated with questions from readers. While I’m not qualified to give anyone medical advice, I’ll gladly share my own personal experiences.  Given the number of messages I’ve received, I figured I should answer the most common questions in a post for all of you, so here you go: Continue reading “In Response to Your Lyme Questions…”

The PANDAS Games

Does anyone ever win the PANDAS Games?
Does anyone ever win the PANDAS Games?

During one of my many insomniac nights recently, I found myself watching the second Hunger Games movie, Catching Fire. While I knew this wouldn’t exactly soothe me to sleep, there was one quote in particular that’s haunted me continuously:

Haymitch: No one ever wins the Games… There are survivors. There are no winners.

Continue reading “The PANDAS Games”

Recovery Is Possible!

Sometimes just when you think it's hopeless, you get better!
Sometimes just when you think it’s hopeless, you get better!

Okay, I’m keeping it shorter this week, because I’m doing so well that I’ve been extremely busy! As I’ve said in the past, the better I’m doing, the less I tend to post and tweet, because I’m away from the blog living my life.

Continue reading “Recovery Is Possible!”

Goodbye, Anorexia?

Did I really eat a restaurant without having a panic attack?
Did I really eat a restaurant without having a panic attack?

This week, I reached a turning point in recovering from my eating disorder.

Up until now, although I’ve known how destructive my restricting has been to my body and though part of me wanted to stop, anorexia had so much control over me that I wasn’t completely willing to give it up. I said a few weeks ago that I was going to start treatment for it, but honestly, I was so depressed the day of the appointment that I couldn’t get out of bed and just cancelled it.

Continue reading “Goodbye, Anorexia?”