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7 Common Stages of Coping With Treatment for a Rare Disease

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One day, you may be at 60 percent capacity, feeling happy about the progress you’ve made towards recovery. That’s a far cry from the five percent capacity you may have had in the hospital when you were admitted for an acute attack.
But the next day, you could be back at 30 percent.

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

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

One day, you could be brimming with optimism for the future and the burgeoning possibilities ahead of you. Hard-fought-for medications may have been infused into your body, and you may notice signs of healing.

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

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

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

These days, I’m happy to say that my victory-to-crisis ratio is creeping higher and higher. In the last three months, I have hopped on some planes. I have coordinated care between three neurologists. I conquered three chemotherapy infusions. Veni, vidi, vici. That’s the short and snappy version — the one that I use to create an empowering personal narrative.

But it’s also the version that glamorizes what was truly a 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? There’s 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, Glamor, 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? I’m talking about the mess that begins and ends with the mindset that life will never be the same again after you get sick.

This is written for you. I invite you to temporarily set aside your personal health concerns 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.

The hope is that this equips you with a framework to unpack your own mess, helping you come to terms with and process the tough medical crap you’ve been encountering (or might encounter in the future if you’re new to 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 feel less overwhelming.

This is also for friends and family looking for insight into what your loved one with a health condition may be going through. To belabor an important image, chances are, you’re only privy to the tip of the iceberg. There’s a bunch more underneath — a lot of it “uglier” than what you might imagine.

With that in mind, let’s take a closer look at the seven 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 enough 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 who aren’t there yet, take solace in knowing you’re not alone.

Stage 1: Denial

Half a year ago, you may never have thought you’d actually be getting chemotherapy.

(As in what they give cancer patients who are much older than you are).

You have an autoimmune disease. You don’t have cancer. You may still be walking and talking. Your symptoms are manageable. (They’re not necessarily that manageable — that’s the denial talking).

Yet you may 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 this one has told you: Chemo involves a scary medication! You risk becoming infertile! You could lose your hair! It could hurt you! You’ll feel terrible when you’re 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 may be unfamiliar territory to be on the opposite side of this — you may never have had a doctor be more concerned about the severity of your disease than you are. The idea of being offered a new, intense medication is surreal (Hello, friends who have spent years being medically gaslighted!)

Stage 2: Anger

You may give your treatment some thought. You might not feel OK with the idea of going through chemotherapy. Hasn’t your body already been through enough?
Your specialist may understand that taking this step is a big deal. You might agree to try out a different treatment first, one that involves a 10-day inpatient admission in a different state. This may feel a lot like the lesser of two evils.

Whereas this treatment may have worked for you once before, this time, it may not. It’s maddening: you expended all this time, energy, and money only to determine that chemo might be inevitable after all?

Sometimes the struggle of being sick may push you to fantasize about a world far removed from your own. You might think about 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 others your age — instead of feeling angry about your ailing health and its implications on your future monetary and physical self-sufficiency. And then, you may laugh bitterly when you find the humor 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 may think of what could have been.

If only one of those seven asshole neurologists hadn’t taken five 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 may soon crumble under the weight of your increasing symptoms. You might reach an inflection point; you may feel your inflammation worsening, and you could be ready to embrace the sacrifices you need to make in order to heal.

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

Stage 4: Panic

Surprise, surprise: your treatment plans have been interrupted!

Most rare or poorly understood diseases lack clear protocols, let alone FDA- or insurance-approved medications. Therefore, you may feel like you can’t trust anyone — from infusion centers to medical providers to drug manufacturers — to stay on the same page as you. Any change, no matter how small, could upend the whole shebang. This may leave you to fight the medical system while simultaneously declining from lack of treatment. (To the people in our support networks who show up to help us, thank you.)

Maybe a new medical assistant submits the wrong insurance code, so you’re left with a bill for $14,000. Maybe your doctor is mercurial and backtracks on following through with the plan that they had laid out previously. Maybe you aged out of pediatric care and can’t find an adult provider who will renew your prescriptions — despite having a strong track record of controlling your symptoms — or your provider moves away. You could be left with a colleague who 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 the months and months of treating my 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 when to cut your losses and where to reallocate your energy, or become more adept at managing the obstacles you face. This isn’t to say that it’s easy to do this. I just want you to remember that it’s doable — despite the dark moments that might sway you otherwise.

A handwoven tapestry embroidered with the word "Believe" along with a sunrise.

For me, having to coordinate care between three medical systems in two countries — during nearly the entire length of the pandemic — may tell 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.
You may decide you’re ready to take the chemo plunge when suddenly things go sideways. The curveballs might then resume with force.

Stage 5: Relief

You may never have appreciated how difficult it can be when things are left up in the air… until those things become how you’re going to regain symptom control — with what treatment, from whom, and at which location. Illness can introduce enough uncertainty into your life as it is; throw ever-evolving questions about treatment accessibility on top of that, and you could be staring down a landscape of anarchy. That may have been your life for two long years.

So you might feel overcome with relief once it registers that a concrete plan is finally in the palm of your hands. You may trust that a plan 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, and they might be standing relatively still for once, so you can finally kick back and relax.

You might swap hours of research, phone calls, appointments, and other self-advocacy activities for mindlessly drifting around in Mario Kart 8. You may enjoy yourself. And you should 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, and uncharted waters loom ahead. You’re at the tail end of your treatment plan, and the sobering thoughts may start to creep back in.

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

Some things may have changed; others may have not. It may be reassuring to feel treatment moving the needle; but you might wonder about the symptoms that still remain. Your hope can be put to the test, with questions like “Will I have to advocate for further treatment?” and “How long until I’m well enough to work again?” weighing on you more and more.

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

You may realize the situation is less sad when you zoom out to a full-month calendar view, rather than judging your 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: your “chemo” brain and fatigue might rev back up with your last chemotherapy infusion.

Stage 7: Acceptance

Half a year ago, you may never have thought you’d actually be getting chemo, or in other words, taking a leap of faith.

You may never have thought you’d be flying thousands of miles, receiving smooth medical care, and crushing chemo.

Yet here you may be, half a year later, having conquered what once seemed impossible. Regardless of how you felt along the way, you may have pushed through and achieved more personal goals than you have in a long time. You likely overcame tremendous obstacles with spirit intact and feel ready to take on the next chapter.
Heavy-duty infusions may be done, and gentler oral medications may remain. Your doctor might advise you to be patient, as it can take months for these to reach their full effect.

You may 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 today, that is enough.

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 sad 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 you in anguish for months.

Even with acceptance, there are still times when I find myself floundering. I don’t mean to wrap my journey up 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 occasional doubt and uncertainty. But all things considered, I’ve been getting by pretty well — even if I feel a little worn out and fatigued. The ups and downs are easier for me to swallow after having seven sick years to develop a habit of choosing hope over fear.

If you’ve been lacking the bandwidth to do much more besides make sense of your feelings about the cracks of the medical system, I hope this post gave you some strength to keep climbing out of those cracks.

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

Rather than taking care of our minds, bodies, and spirits to give ourselves the best shot at healing, patients in our community are often forced to shift their focus to hidden battles no one prepares them for. They may be passed between the pharmacist, doctor, nurse practitioner, insurance agent, drug manufacturer, and insurance center for weeks or months — and may not receive the answer to what they need to find out. Instead, answers may come from the unlikeliest places — including discussions in that one corner of a Facebook group between strangers going through the same obscure health symptoms.

If you have a chronic illness, you probably know all about that. I write none of this to complain but instead to shine a spotlight on the sh*t I hear from every other person who cold messages me after seeing my blog or social media posts. These are the real battles that medical providers don’t recognize enough. The medical field can be a hostile environment out there — doubly so if you lack the support system to help carry you through it.

If that sounds like 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 putting one foot after the other, the things that seemed impossible yesterday may be the things you find yourself surmounting today. It may just start 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. Godspeed to those of you in the thick of the seven stages of receiving medical treatment right now.

This story originally appeared on Where Are My Pillows?
Getty image by FatCamera.

Originally published: April 27, 2022
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