Introduction

One day you’re at 60% capacity, feeling happy about the progress you’ve made towards recovery. That’s a far cry from the 5% you were in at the hospital when you were admitted for an acute attack.

But the next day, you’re back at 30%.

One day you’re in shock, having met a new doctor who not only acknowledged your deteriorating health but offered you the option of escalating treatment.

But the next day, you get the call that insurance won’t pay.

One day you’re breaming with optimism for the future and the burgeoning possibilities ahead of you. Hard-fought medications have been infused into your body, and you’re noticing signs of healing.

But the next day, new symptoms pay your body a visit.

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This is a small window into the series of ups and downs that characterize living with a rare, chronic, and/or poorly understood disease. Your days are punctuated by twists and turns that leave you with whiplash. Linear movement across the Game of Life is replaced by stumbling through a board of Snakes and Ladders. For every break you get there’s also a pitfall.

At least, that’s the impression I have after living through 7 years of autoimmune encephalitis and talking to hundreds of others in the rare disease and chronic illness communities. Uncertainty underpins every moment: it could be victory one day, crisis the next. That was my story of 2020 through 2021.

These days I’m happy to say that my victory-to-crisis ratio (lol) is creeping higher and higher. In the last 3 months I hopped on some planes. I coordinated care between 3 neurologists. I conquered 3 chemotherapy infusions. Veni, vidi, vici. That’s the short and snappy version; the one that I use to create an empowering personal narrative (law of attraction yo 🙌 ).

But it’s also the version that glamorizes what was, in reality, a very messy ordeal. Securing and surviving—and dare I say sometimes enjoying—the latest chapter of my medical care has been no small task. Can you imagine how lousy the situation must have been beforehand for me to say I enjoyed my time getting chemo? Nothing like the sweet anguish of medical gaslighting, injustice, and paternalism… Underneath the tip of the veni vidi vici iceberg is an overwhelming mass of congealed blood, sweat, and tears encasing the clumps of hair I’ve lost through chemo. Sorry not sorry for the gross imagery.

Behind the Glitz, Glamour, and Gross Imagery

Let’s see a show of hands: who knows that feeling of straining to hold it together externally lest someone catches a peak of your internal mess? The mess that begins and ends with life would never be the same again, as soon as I fell sick?

To those whose hand shot up, this post is written for you. I invite you to temporarily step outside of your world so we can spend a few moments walking in my shoes. Together, we’ll loosely map the process of undergoing a new set of treatments to the Kubler-Ross stages of grief—loosely, with a spin. There’s denial, anger, bargaining, depression and acceptance, with some all-too-familiar twists as you’ll see below.

The hope is that this equips you with a framework to unpack your own mess, helping you come to terms and process through the tough medical 💩  you’ve been encountering (or might in the future, if you’ve been freshly placed on this journey). It’s normal to feel discombobulated; you’ve been through a lot, perhaps more than you give yourself credit for. Maybe by examining my personal iceberg, yours will become less overwhelming.

This post is also for friends and family looking for insight into what your loved one is going through. To belabour an important image: chances are you’re only privy to the tip of the iceberg. There’s a bunch more to what’s underneath, a lot of it uglier than what you might imagine. See: last sentence of previous section.

With that in mind, let’s take a closer look at the 7 stages of receiving medical treatment, as told by a rare disease survivor.

Please remember that just as traditional grief can take on numerous forms, so too does the medical journey. You might swim around some stages in circles; or you might skip over other stages completely, making it through to the other side with grace. Some individuals are fortunate to respond beautifully to treatments, leaving their ill days behind in the dust! It doesn’t hurt to believe that that could be you too, and I hope that for as many of you reading this as possible.  For those that aren’t there yet, take solace in knowing you’re not alone.

Stage 1: Denial

Half a year ago, you never thought you’d actually be getting Cytoxan (cyclophosphamide).

In other words: chemo.

As in: what they give cancer patients much older than you are.

You have an autoimmune disease. You don’t have cancer. You’re still walking and talking. Your symptoms are manageable. *They’re not really that manageable; that’s the denial talking.

Yet you hear your newer specialist, the one with genuine expertise in your rare disease, nudging you: “Read up about it. I think two months’ worth might be enough to push you into remission.”

In that moment, all you can think about are the classic counterpoints every doctor before her has told you: it’s a scary medication! You risk becoming infertile! You could lose your hair! It could hurt you! You’ll feel terrible on it!

Many patients in your position—the ones with limited biomarker abnormalities, without some of the most obvious manifestations of the disease—have to beg their doctors for treatments. It’s unfamiliar territory to be on the opposite side of this; you’ve never had a doctor be more concerned about the severity of your disease than you are. The idea of being offered a new and intense medication is surreal (hello friends who have spent years medically gaslit 👋).

Stage 2: Anger

You give it some thought. You don’t feel okay with the idea of Cytoxan; hasn’t your body already been through enough?

Your specialist understands that taking that step is a big deal. You agree to try out a different treatment first: plasmapheresis, which involves a 10-day inpatient admission in a different state. Which feels a lot like the lesser of two evils.

Whereas plasmapheresis had worked for you once before, this time it doesn’t. It’s maddening: you expended all this time, energy, and money only to determine that chemo is inevitable after all?

Sometimes the burdens of being sick pushes you to fantasize of a world far removed from your own. You think of how you want to be angry about being passed over for a promotion, getting your home purchase offer rejected, or anything else that’s a big deal to the next person your age—not angry about your ailing health and its implications on future monetary and physical self-sufficiency. And then laugh bitterly when you find the humour in the fact that your fantasized world is still clouded by anger. Maybe you should be setting your sights on rosier visions…

Stage 3: Bargaining

You think of what could have been.

If only one of those 7 asshole neurologists hadn’t taken 5 years to diagnose you in the first place.  If only you had received aggressive treatment out of the gate. Maybe then you wouldn’t have to face the reality of multiple first- and second-line treatments having failed you, with only the most hazardous one left to try.

Your resistance to escalating treatment soon crumbles under the weight of increasing symptoms. You reach an inflection point: You can feel the inflammation worsening, and you’re ready to embrace the sacrifices you need to make in order to heal.

Sometimes you run through all the possible options and realize the one you initially balked at is actually the best you have available.

Stage 4: Panic

Surprise surprise: your treatment plans are interrupted!

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As many reading this will know, most rare and/or poorly understood diseases lack clear protocols let alone FDA- or insurance-approved medications. The result is that you can’t trust anyone—from infusion centres, to medical providers and their colleagues, to drug manufacturers—to be (or stay) on the same page.

Any change, no matter how small, could upend the whole shebang. This leaves a terrible burden on patients, who are left to fight the medical system while simultaneously worsening from lack of treatment. (To the caregivers and support network that show up to help us: we patients sincerely thank you.)

Maybe a new medical assistant submits the wrong insurance code and you’re left with a bill for $14k. Maybe your doctor is mercurial and backtracks on following through with the plan that had been laid out previously. Maybe you aged out of pediatric care and can’t find an adult provider that will renew your prescriptions, despite a track record of controlling your symptoms. Same thing for those whose doctors retire or move away. You could be left with a colleague that disagrees with your long-standing diagnosis, and haphazardly labels you with anxiety or functional neurological disorder instead.

This is the stage I’ve revisited most over months and months of treating autoimmune encephalitis. If you’re in a similar spot, please keep going and know that crisis mode doesn’t last forever. You either win the fight, figure out where to cut your losses and reallocate your energy, or become more adept at managing the obstacles. Which isn’t to say that it’s easy. I just want you to remember that it’s doable, despite the dark moments that might sway you otherwise.

For me, being in the position of having to coordinate care between 3 medical systems in 2 countries—during nearly the entire length of the pandemic—tells you more than enough. To be clear, I’m extremely grateful that I was even in a position to pull this off in the first place thanks to support from wonderful family and friends.

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Picking your Cytoxan chronicles back up: you decide you’re ready to take the chemo plunge, when suddenly things go sideways. The curveballs resume with force.

Stage 5: Relief

You never appreciated how difficult it can be on the psyche when things are left up in the air…. Until those things became all matters related to how you’re going to regain symptom control: with what treatment, from whom, and where. Ill health introduces enough uncertainty into your life as it is; throw ever-evolving questions of treatment accessibility on top of that and you’re staring down a landscape of anarchy. That’s been your life for two long years.

So you’re overcome with relief once it registers that a concrete plan is finally in the palm of your hands. One you can trust will actually be executed—even if that plan involves a harsh drug that kills off your good cells as well as the bad. You have enough ducks in a row­­­­, standing relatively still for once, for you to finally kick back and relax.

You swap hours of research, phone calls, appointments, and other self-advocacy activities for such things as mindlessly drifting around in Mario Kart 8. You enjoy yourself. And you know you deserve to—fatigue, nausea, hair loss, and the mental scars of all previous health shenanigans be damned.

Stage 6: Depression

Super Mario Party is winding down, with uncharted waters looming ahead. You’re at the tail end of your treatment plan, and the sobering thoughts start to creep back in.

Treatment doesn’t take effect overnight, but you enter the window of time in which a response is generally expected. And you find yourself at a loss.

Some things have changed; others have not. It’s reassuring to feel Cytoxan moving the needle; but you can’t help but wonder about the symptoms that still remain. Your hope is put to the test, with questions of Will I have to advocate for further treatment? and How long until I’m well enough to work again? weighing heavier and heavier.

The mental exhaustion is real. You expected more by now, given the rosy outlook your doctor expressed at the outset.

You realize the situation is less depressing when you zoom out to a full month calendar view, rather than judging progress on a day-to-day level. It’s the daily fluctuations that lure your thoughts to darker places. Then, the picture is obscured once again: the chemo brain and fatigue rev back up with the infusion of your last Cytoxan.

Stage 7: Acceptance

Half a year ago, you never thought you’d actually be getting Cytoxan.

In other words: taking a leap of faith.

As in: flying thousands of miles, receiving smooth medical care, and crushing chemo.

Yet here you are, half a year later, having conquered what once seemed impossible. Regardless of how you felt along the way, you pushed through and achieved more personal goals than you have in a very long time. You overcame tremendous obstacles, spirit intact and ready to take on the next chapter.

Heavy-duty infusions are done; gentler oral medications remain. Your doctor advises you to be patient, as it can take months for them to reach full effect.

You accept it’s time to let the remaining chips fall where they may—after all, you’ve already left it all on the field. You’ve done everything you can to give your body its best shot at full recovery and permanent remission. And that, today, is enough.

Wrapping Up: The Total Iceberg

In case it’s unclear, I’m writing this now from the acceptance stage. I found it hardest to write about the anger stage—if anything, medical debacles tend to make me more depressive than angry. But it could be a different scenario for you; I want to reiterate that managing a serious illness is a non-linear process, with complexities that can leave one in anguish for months.

Even with acceptance, there are still times I find myself floundering. I don’t mean to wrap my journey in a bow and say that it’s a fast-moving storm that gives way to sunshine and rainbows. There’s no way to capture all of the tedious but not any less terrible in-between stuff that is typical of a long-lasting medical journey.  And I’m still in the midst of an evolving situation, with a slow-going recovery and the occasional visit from doubt and uncertainty. But all things considered I’ve been getting by pretty well, if just a little worn out and fatigued. The ups and downs are easier to swallow with having 7 sick years to develop a habit of choosing hope over fear.

To those of you who checked in to ask how I’ve been doing the past months, I appreciate the care, concern, and encouragement—words of affirmation are my love language 🥰. I also recognize that I probably didn’t provide more than a cursory answer, and probably lost track of some conversations altogether… sorry, try me again! It’s hard to fully engage when your brain is on the fritz, your verbal abilities are impacted (still), and you don’t have the bandwidth to do much more besides make sense of the crazy-making that is working yourself out of the cracks of the medical system. Harder still when encephalitis brings out an avoidant personality style, lol. If you’re in a similar spot, I hope this post gave you some strength to keep climbing up and out of the cracks.

Speaking of cracks, let’s circle back around to stage 5 and what provided me a sense of stability for the first time in 2 years: securing and undergoing 2 months of chemo treatments. The dominant emotion I felt was relief, rather than the fear, sadness, or anxiety you might expect with having hazardous materials infused into your veins.

This is a terrible indictment on the medical system.

Rather than taking care of our minds, bodies, and spirits to give ourselves the best shot at healing, patients in this community are often forced to shift their focus to hidden battles no one prepares you for. Like being passed between the pharmacist, doctor, nurse practitioner, insurance agent, drug manufacturer, and infusion centre for weeks or months—none of which actually provide the answer to what you need to find out. Instead, answers come from the unlikeliest places… including discussion in that one corner of a Facebook group, between strangers going through the same obscure issue as you.

But you probably know all about that. I write none of this to complain but to shine a spotlight on the sh*t I hear from every other person cold messaging me after seeing my blog or social media. These are the real battles that medical providers don’t recognize enough. It can be a hostile environment out there; doubly so if you lack the support system to help carry you through the worst of it.

If that’s you: your struggles are valid. No one should have to deal with that BS, especially those who are already ill and vulnerable. But if you keep plodding one foot after the other, the things that seemed impossible yesterday are the things you find yourself surmounting today. It just starts with the belief that these things are doable. If you’re in doubt, join a relevant support group for stories of people proving this every day.

So there you go. There’s the entire iceberg. Godspeed to those of you in the thick of the 7 stages right now 🙏

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You may be interested in the following posts next:

The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis (A Rant)

What happens when your autoimmune encephalitis treatments aren’t working?

World Encephalitis Day: Where are we in 2022?

The 7 Ways to Piss Off Your Neurologist, as Told by an Encephalitis Survivor

Relapsing… again. Autoimmune encephalitis round #3: Let’s go 🥊🥊🥊