Getting the rant out of the way…
Autoimmune encephalitis (AE) is a nightmare.
Internists don’t want to touch it. Psychiatrists look on with sympathy. And most neurologists would rather not acknowledge it at all, unless scores of paraclinical investigations are screaming in their face.
So you might begin to imagine how dejecting it feels to be the one actually living with this illness. I don’t have the luxury of forgetting about AE, and walking the other way unscathed. Instead I’ve been saddled with years of autoimmune dysregulation, made worse by doctors that refuse to take meaningful action. And the heartbreaking part is that it’s no longer due to medical ignorance.
Five years of shoulder shrugs—okay, fine. The beginning and middle of my journey were mostly question marks, with little to no answers. But now? I’m no longer a medical mystery. I have NO comorbidities, and I have NO alternative diagnosis (unless you want to count handwavy “adult ADHD,” which I still find pretty comical).
Where are we at today? Well 1) it’s been 2 years since I received the AE diagnosis, 2) the diagnosis has been validated by a leading expert in the field, 3) I have demonstrated significant and measurable improvement on immunomodulatory treatments, and 4) now I have accumulated worsening labs and imaging upon denial of further treatment in my city. I’m not sure how to avoid drawing cynical conclusions about my local fraternity of neurologists, of which I thank God I am not entirely dependent on (at least for the time being).
It takes some mix of gross incompetence, ego, and delusion to act like my present, worsened health state is baffling—truly beyond the realm of medical explanation—yet that’s exactly what I’ve faced from local neurologists this past month. We’ve gone from, essentially, “prove to us there’s an objective problem” to “okay, I guess we can’t deny there’s a problem; but now we’ve decided you need to meet this arbitrary threshold of MORE debilitation in order for us to feel compelled to act further.” It’s dehumanizing; and it hurts to know that this isn’t even the worst of what I know some other AE patients deal with.
And now for some good news
The facts: I’m relapsing from AE. Or perhaps more accurately, the inflammation that we began to control while hospitalized 6 months ago was never truly eliminated because aforementioned local docs refused to provide adequate maintenance care. In any case, I’m extremely fortunate to have a lifeline out of this right now because of the AE expertise of the neurologist who treated me in hospital.
She’s located thousands of miles away, and there is extreme logistical and financial complication in receiving ongoing care through her. I’m not sure how long this is sustainable for, but we’ll figure out a longer-term plan once I stop feeling like my symptoms are spiralling out of control.
Earlier this month, I bit the bullet and travelled to receive an infusion of Actemra (tocilizumab) at her office. While there, within 10 minutes of talking to me, she remarked offhand “I can tell you’re very unwell—it’s more obvious in person than over video.” For context, I love her; but she’s also not the warm and gushy type of doctor concerned with validating your emotions.
Now, you may be thinking, yeah so what? And? But… that’s it. I’m humoured by the fact that in my personal history this statement stands out to me as incredible doctoring—simple commentary that could be viewed as basic observational skills you would hope all neurologists would have. In contrast, I’m used to a standard of neurological care along the lines of “let’s do this quick 10 minute Montreal Cognitive Assessment. Huh, guess you’re only scoring as having mild impairment. We can’t possibly predict the direction that your illness may be heading now, despite this following the same worsening pattern of AE symptoms as documented in your history twice before, and despite you stating subjectively that you’ve had to stop working. Goodbye.” There is nothing I take for granted with doctors anymore.
However, bona fide AE doc has restored some faith. We’ve always been pretty in sync, with her answers and decisions more or less lining up with the conclusions I’ve drawn independently from medical journals and patient support groups. I’m grateful she’s invested in helping me achieve long-term remission from AE, and I look forward to a future where her standard of care is the norm rather than a rarity.
Looking ahead, there’s likely going to be more travel and more infusions in my future. But if early signs of healing on Actemra are any indication, the price of medical drama and diminishing bank account numbers is worth it. It’s not pretty, but it’s worth it. I feel like I owe it not just to myself to push onwards down this road, but to loads of people far and wide who have demonstrated generous emotional investment towards seeing me recover for good. I know I’m far more lucky than not.
I should make it clear here that despite the bitterness I’ve expressed in this post, my psyche is actually in a decent spot. I’m hopeful, and like less of a zombie than I had been leading up to the infusion—with the caveat that I still experience a lot of fluctuations, and have a long way to go towards being healed. I guess there was just a LOT from the past month I needed to get off my chest, haha.
To anyone else caught in a similar nightmare right now: Good luck. Keep going. And don’t stop.
Want to connect? Find me on Facebook, Instagram, or Twitter.
You may be interested in reading the following next:
This is what it took to lift me out of an autoimmune encephalitis relapse
The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis
Autoimmune Encephalitis Recovery, Part 1: A Look Behind the Scenes of Emotional Breakdown
Autoimmune Encephalitis Recovery, Part 2: The Day-to-Day Emotional Challenges
The 7 Ways To Piss Off Your Neurologist, As Told By An Encephalitis Survivor
(sorry–I signed in with the wrong email address!)
It is SO difficult to not become bitter and cynical (for me at least). I hear myself saying frequently, “These doctors don’t care.” That’s probably wrong. Most probably care. But they’re so constrained by a health care system that ties their hands and makes them/their patients meet arbitrary standards that make no sense and just cause further debilitation and suffering. How is that care? How is that “do no harm”? I get that we can’t have a specialist on every disease in every city. But hell, can’t they at least talk to one another?? Can’t they confer, for the good of the patient?? Why is that too much to ask? I’m sorry you’re having to go through this again and have to travel when you probably feel like crap. I hope you are on the mend soon.
I’ve had very similar thoughts run through my head! I’ve tried to make sense of why certain docs practice medicine the way they do, but I fall short of coming up with any satisfying answers. It’s just a very broken system when it comes to certain things. Thanks for the supportive words though, and I hope that you’re hanging in there on your end!
That’s sounds all pretty tough and so frustrating. I hope you find your pathway to health once again. Getting the right person to support you, offer proper treatment and ongoing support with all the other connected issues that come with AE has no price. I will be watching on social media to see how you progress (positively here hoping) in the coming months. All the best
Your support is appreciated, Véronique! I know you get the sorts of E challenges that exist within the medical system today and I’m glad for others like you who are raising awareness of what it’s like to go through such a nasty illness. To better things ahead!