5 Things I Would’ve Told Myself When Diagnosed with PANS

After eight years of a mysterious illness no one could figure out, one July morning in 2014, a neurologist finally cracked the code: I had PANS.  My body was attacking part of my brain, leading to all sorts of bizarre symptoms.

But at the same time that she shed a light onto my case, the new diagnosis plunged my whole family into a darkness we couldn’t have imagined.

Yes, we had an answer, but we’d also just opened a pandora’s box of questions without knowing it. 

What triggered this?  What will it take to get better?  What treatments will work?  How long until they work?  How will we know when I’m cured?

At first, you rejoice that someone has found an accurate label for your affliction, but then it occurs to you that it not only means your brain is inflamed, but that you have to go through the back doors of mainstream medicine to get treatment.  By accepting a diagnosis mistakenly considered controversial, you’ve also just accepted that many doctors and friends will never be able to wrap their heads around the full extent of your suffering.

Getting diagnosed with any serious chronic illness is hard enough, but when 99% of doctors are completely clueless about it, and you have to go out of state for care, there’s a whole other level of loneliness and confusion.  Not only do you have to fight to get better, but you have to do your own research and educate any local doctors you encounter.

In 2014, PANS was even less known and accepted than it is now, and there were no official treatment guidelines yet.  It was a lot more trial and error even when seeing one of the leading experts in the field.  As the research studies came out over the last few years, my protocol would change at each visit.  It felt like science was always one step too far behind where I needed it to be.

That morning, getting the diagnosis was like adopting that exotic houseplant I had in college, whom I called Al.  The plant came without a label or instructions on how to care for it—the cashier didn’t know what to do with it, either, and just rung it up as if it were one of the other easily identifiable plants the store sold.  I had Al for three years, and I never did figure out what he was.

Al was temperamental.  Sometimes, he needed to have a lot of sun, but other times, the tips of his leaves would die when he was too close to a window.  I’d put him in the middle of the room, and then he’d be happy again, but before I knew it, he’d start dying.  Everything I did for that plant I had to improvise and constantly adapt based on how he responded.

My case of PANS has been a lot like Al.  There was no instruction manual on how to live with it day to day.  I’d respond to treatment for a while, recover, and then relapse again—often for unclear reasons.  I’ve worked with some highly trained doctors in various fields over the years, but trying to control this condition has felt like trying to throw a dart at a bull’s eye while blindfolded.

Sometimes, we’ve missed.  But other times, we’d strike it spot-on, and I’d go into remission.  I’ve now been without a major relapse in almost two years, though I certainly have flare-ups from time to time that don’t last long.

I would’ve thought that five years after my diagnosis, PANS would be permanently behind me, and I’d be making waves in my field.  I thought that first IVIG five years ago might cure me, and I’d move on with life for good.  Instead, thanks to a Lyme-induced immune deficiency, I now need IVIG every month indefinitely.  But I got my mind back from PANS, and for that, I’m very grateful.

I tried to come up with something profound to say to all of you about my five-year mark, but I don’t have any secrets to offer on how to get better, because there’s no universal solution.  But I know there are people who are going to find this post from the same, lost desperate my family was in at the beginning, so I’ve at least put together a list of a few things that I’ve learned along the way.

Live in each moment.

You’re going to have flares even after you start getting better.  Don’t catastrophize them when you do by assuming the sky is falling and will never be right ever again—know that the flare will pass, and focus on what you need to do in this moment.

There’s no simple fix.

If it sounds to good to be true, it probably is.  There are a few cases here and there where a person with PANS gets better from something as basic as more Vitamin D or removing an allergy trigger, but this is the exception.  PANS has multiple causes, usually with multiple triggers and complex mechanisms, and there’s no one-size fits all to dealing with it.  Don’t expect one supplement or one dietary change to fix everything.  And often, it’ll even take more than just doing IVIG.

You can fall down a rabbit hole researching things to get tested for and alternative treatments to try, but sometimes time to rest and let treatments you’re already doing work is one of the best things you can give yourself.

Recovery can be so slow you don’t see it happening.

This has been the most infuriating part of the whole thing!  With IVIG, sometimes it took several months before I realized anything was improving.  I’d feel like nothing was changing, but then one day I’d realize I’d picked up a book for the first time in years, for example, because I could finally think clearly enough to enjoy it.  Or I’d find myself wanting to hang out with friends again.  Or it’d suddenly occur to me that I was feeling happy to be alive.  There’s never been a single day I can pinpoint as The Day when I recovered, but I’d eventually see it in subtle signs that became more and more frequent over time.

Keep living as much as possible.

There’s a fine line between pushing yourself too much and hindering recovery, and giving yourself something to live for.  I’ve never taken a break from school, even when horrifically ill (though I can assure you I wasn’t actually doing much homework through the worst, thanks to some understanding professors who removed deadlines).  I stayed in school because it let me feel like I was still moving forward and participating in life, even if all I could manage was to sit in the back of the class in silence without comprehending a single thing that went on.

Staying in school sometimes had a negative effect on my health, but it also gave me a reason to wake up each day and something concrete to point to in order to see I was still making progress in life.  With PANS, you can feel like everything has been taken away from you on the inside because you lose your mind and your sense of who you are, so it’s helpful to keep at least something consistent about your life on the outside—whatever form it may take for you.  But also, don’t feel guilty for stepping away from school or work for a while if that’s what you need.  Everyone is different.

Remember that you’re going to get better.

I can’t tell you how many times in the midst of my illness that I’ve wondered if I’d ever get my mind back and get to keep it.  I’d look at old pictures and achievements from before the worst hit me and wonder if I’d ever be that happy or productive ever again.

But guess what?  I did get better, and I went on to finish college and go off to grad school.  It’s been a bumpy road getting here, to say the least, but I’ve made it to a point where this illness doesn’t control my life.  You can, too.

Yesterday was exactly five years on from my diagnosis, and though these last few years haven’t been as expected, everything has turned out alright.  No one can tell me if I’m truly done with PANS or if I’m going to have to manage it for the rest of my life since it went untreated for so many years, but I’m glad and grateful that getting treatment has given me another chance at a life that I otherwise wouldn’t have had.

Share your thoughts. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s