This post is a follow up to World Encephalitis Day: Where are we in 2022? For context, I’d encourage you to read that post first.
Be forewarned that you should probably find another corner of the internet if you’re not feeling up for some pessimism and snark. For something topical and with a more hopeful tone, check out the Encephalitis Society’s page about World Encephalitis Day on February 22 here.
Where are we in 2023?
Agitation. We’re in a state of agitation.
Or maybe that’s just me describing my personal state, and unfairly projecting that on to an entire field 🤷♀️ In any case, agitation is the word that pops up when I consider what’s on my mind for this year’s post. Whereas World Encephalitis Day: Where Are We in 2022? was the result of careful reflection on 2.5 years of being a diagnosed autoimmune encephalitis (AE) patient (since 2019; though I first got sick in 2014), you can consider this 2023 update as more of a single snapshot in time.
Haphazardly put together because
I’m an unfocused ball of chaos I have a bit more of a life now beyond encephalitis than I did last year. Also, because 2022’s post still does justice to describe my foundational views in 2023. So start there if you want my holistic take on the field. TL;DR: pray you’re an antibody-positive patient with a textbook, monophasic presentation, because everyone else is still f*cked. TL;DR: while there is still a wide spectrum of outcomes, the AE field at least has a basic framework now that is serviceable enough to produce okay results for the average AE patient. Have I made the agitation a little too palpable
Which I’m not.
Where am *I* in 2023?
You have one opportunity to get this right; otherwise, it’s game over.
That’s what it *felt* like at so many steps along the way. There was no AE patient manual for me to follow; I was largely on my own to figure out how to advocate for myself. To make the decision to find a new doctor. To fly across international borders for treatment. To prevent my brain from permanently slipping away.
In reality, it wasn’t one opportunity but multiple. Across 8 years, that your-whole-life-is-on-the-line feeling has bounced through me like a perpetual echo. My medical journey can be summed up as an obstacle course through 12 neurologists to wind up with all first- and second-line AE treatments. Each turn meant higher stakes. The finish line came at a heavy cost. But after all that, I did get diagnosed, I did get out of two relapses, I did recover three times… and it’s not game over.
Rather, it’s have-fun-with-the-aftermath.
Lately, this looks a whole lot like trying to quiet those echoes of the past and just relax. Which hadn’t been going too bad for most of 2022—after finishing cyclophosphamide (Cytoxan) and starting to revive—until I hit a series of wobbles starting near the end of year.
A failed switch from Concerta to Vyvanse? Situational stressors? Immune system stimulation from the bivalent vaccine? Side effects from a trial of oral steroids?
I found myself sitting on a fence, twice, questioning the stability of the ground below. Feeling like a puff of the wind might knock me back, yet again, into relapse land.
But those wobbles felt different compared to the relapses I had in 2020 and 2021, and they resolved within a few weeks. I’m pleased to report that I’m no longer so agitated that Concerta has stopped masking my incompetence entirely. But I am agitated enough to complain 😬
It would be one thing if I had experienced a one-and-done course of the illness. Still pretty damn disastrous—goodbye academic career and half a decade of income generation—but it would be a static, one-time trauma to resolve. Frankly, at the end of 2019 I was fine. I managed to build my life back up to a comfortable place during the paltry 4-5 months I experienced remission, and looking back it seems like a dream. One where I was naïve to the realities of relapses, losing a second career, medical debt, and new depths of medical gaslighting.
But it’s another thing to experience a recurring nightmare. And these days—when I’m agitated, which is often—I look around and see 8 years of accumulated rubble. It makes me feel overwhelmed, bitter, discouraged, and sometimes helpless. Which is… okay. Have you ever seen denial used as a coping mechanism
Until it’s not okay, and I collapse. Which tends to happen when I:
- Overestimate how many balls I can juggle; and/or
- Get smacked in the face with
said ballsmedical trauma.
I’m not sure how to rectify this. I’ve been trying the obvious answer, which is to 1. scale back on the number of activities I take on and 2. go to therapy.
But I’ve only gotten so far.
On point 1, I’m conflicted about what the right balance of (in)activity should be. I feel like I’ve already lost prime adult years to encephalitis and want to max out my current functionality (good enough to work); also, the number of functional hours I can squeeze out of a day/week is variable and makes things hard to predict.
On point 2, as helpful as therapy has been for the obvious issues (really—especially EMDR), it’s still an ongoing process to identify and heal from the insidious, complex trauma entrenched in my battle-wearied. bones. And I’m conflicted about resetting my (hyper)vigilance meter, when the present calibration has served me quite well through navigating the medical speed bumps to date.
Circling back to the beginning of this section: I’ve recently recognized that the (mostly reasonable) anxiety I felt over many medical encounters—you have one opportunity to get this right; otherwise, it’s game over—has subconsciously spilled over into how I approach other areas of life. Where there are boundless opportunities (unlike finite doctors and treatment options). Where missteps don’t mean game over at all.
An example of how that’s manifested: in me overthinking the idea of writing, and consequently not blogging at all for months. Oops. I have no shortage of things to write about; but the amount of time it would take for me to hypothetically get it right (read: neurotically toil to populate a blank page until I’ve replicated the fanciful ideal in my head) is not compatible with my baseline strugglebus to keep other balls in the air.
So, consider me publishing this
overabundance of words conveying minimal substance meandering blog an exercise in self-correction.
#growth #stillagitated #f*ckthesegrowingpains
What does your agitation have to do with anyone else?
Let’s get back to the original agenda: patient commentary on where the autoimmune encephalitis field is at. Beyond what I outlined in 2022.
Obligatory disclaimer to say: you should take what I say with a grain of salt, and consult multiple sources before drawing your own conclusions.
I’ve been plugged into multiple online and offline support groups/non-profit organizations since I was diagnosed. They continue to grow and serve more people. And each year I notice more hopeful stories, where the patient receives timely diagnosis and treatment, and they actually get back in the ballpark of their pre-illness quality of life.
The number of autoimmune neurology centres are growing, there are more doctors who are aware of encephalitis and know the appropriate testing to order, and prescriber comfort level is creeping higher because immunotherapies are increasingly become the standard of care across multiple autoimmune diseases. We’ve shifted beyond just theory and fluffy handwaving regarding the basic foundations of the field (ish). These days—at least relative to a few years ago—we’re seeing more practical application.
So when I see newbies under distress, but a) an autoantibody has been identified, b) they’re in a major urban centre, and c) the symptom + biomarker presentation is textbook, I feel reasonably hopeful that— *intentionally vague*—things will work out for them.
On average. Sometimes… sometimes not.
But when you’re dealing with a rare disease as heterogeneous as autoimmune encephalitis, the average sometimes means sh*t all. Because your individual experience is so obtuse you’re not going to find it represented by the sanitized statistics of medical journals. Which makes it no less valid than the average. Which makes it, unfortunately, likely to be dismissed by doctors and scientists. Which makes it more difficult to achieve a good outcome.
I don’t mean to villainize these professionals; without them I wouldn’t be healing. There are tremendous individuals out there who are enabling patients like me to get their life back, who are advancing the field as a whole. Clinical expertise is growing and the research continues to explode.
But as the landscape matures, I’ve noticed some trends that can be summed up as agitation.
In broad strokes, I’d say if there was a disconnect in the early 2010s, it was largely between patients and doctors.
- Patient has problems. Doctor doesn’t recognize problems.
That disconnect is still there today; but the recognition of encephalitis, period, has improved. And now I’d say that there are simply big fat disconnects galore, with tension in any direction you look.
- Antibody-positive patient/family and antibody-negative patient/family struggle to understand each other’s experience.
- Patient/family gets entirely different answers from different support groups.
- Patient/family gets entirely different answers from different doctors.
- Researchers squabble about… everything.
Regarding that last point: maybe that just sounds like an unflattering way to describe the scientific process. To be clear, I ain’t hating on science.
In fact, I’m all for a good squabble when my Concerta has kicked in.
I’m just a tad—actually, a lot—concerned that certain divides in the research community today are hurting a sizeable portion of encephalitis patients. Who have already drawn a short enough straw, as it is, by having a life derailed by brain inflammation.
One example? Arguably the biggest elephant in the room: what qualifies as a diagnosis of genuine autoimmune encephalitis.
Or said another way: if I were starting from scratch, with the way the field has advanced since I was diagnosed in 2019, today I would most likely be diagnosed with functional neurological disorder. Which would mean never accessing immunotherapy and reversing my IQ loss of >30 points, amongst other things.
That disturbs me. But that’s another can of
medical trauma worms that deserves its own post.
Anyway, this isn’t just about my wee little brain; this is also about the whole segment of patients with stories strikingly similar to mine. Who may or may not have “encephalitis” depending on which doctor you ask; but who have unmistakably experienced benefit from immunotherapy.
Or would likely experience that, if they could find a doctor that doesn’t just read today’s encephalitis literature at face value. Which underrepresents cases like mine, and is largely authored by those who keep beating the drums of NMDA. Those drums are very important, yes; but some of their current methods are undermining the rest of the ensemble.
To sum up: I’m just a squishy, agitated agitator. To sum up: the AE space is experiencing growing pains, which is to be expected with advancement in any field. But I’m seeing several awkward, sometimes unnecessary divides that make me question how much collateral damage will be incurred in the next few years. I’ve already seen it worsening outcomes for certain patient populations in support groups and in my DMs. And to bring it home, the research that has received the most attention lately would support few of the medical decisions that healed me.
Food for thought: if the research invalidates the lived experience, is there a flaw in the research?
If you’d like a palate cleanser, hit up the hashtag #Red4WED on social media. Then wear red on February 22. Then tell someone about encephalitis. Then let me know on Facebook, Instagram, and Twitter. Or if you’re reading this after World Encephalitis Day, tell someone about encephalitis just because
it might temper my exasperation more people need to know about + understand this dreadful disease. Then tell me you did so. I could use a reason to be less agitated, and knowing my words impacted someone tends to do that 🙃
You may be interested in the following posts next:
Who ACTUALLY treats autoimmune encephalitis? | Part 1: My experience with doctor shopping, a psychiatrist, and a dozen neurologists
The 7 Stages of Receiving Medical Treatment, as Told by a Rare Disease Survivor
Are we trying to reinvent the wheel in autoimmune neurological disease?
The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis (A Rant)
What happens when your autoimmune encephalitis treatments aren’t working?
Thank you, thank you, thank you!! You have very eloquently described the situation we (the AE, or possibly not really AE but responding to treatment community) are finding ourselves in. Your insight is so very valuable. We appreciate all you are doing for our community and the raw vulnerability you are brave enough to share in the midst of your struggles.
Hey Jenn, thank you for the kind words! I’m glad you guys have kept pushing through and have been able to access treatment, despite the many barriers there are when you don’t neatly fall under the AE diagnostic criteria. We’re an overlooked population that is bigger than most neurologists think. Hope that changes sooner than later