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I’m Not Well Enough For Self-Care: Quarantine With Chronic Illness

I have been chronically ill, with varying levels of severity, since 2011. For two years I have been too ill to work even part time, and I must spend a great amount of my time at home. Now, due to a deadly pandemic, many of my able-bodied friends find themselves in a similar yet different position. Grief and “FOMO” pour over me in torrents as I am reminded of the vast chasm between my life and what my peers recognize as a life, and I wonder how I could possibly communicate it all.

But why is my sorrow surfacing so painfully now, at a time when I arguably find myself in good company? Now all the world is limited like me. Now they grapple with similar questions to me – how to define their worth outside of their productivity, how to spend days where they can’t just leave home for fun, and whether the health care system will be there for them if they get sick. Now they have a taste of what it might be like. Isn’t the chasm closing a little?

Photo by Mohamed Almari from Pexels

I’m finding it’s more complicated than I could have imagined. But the easiest answer I can give right now is that I am watching people simultaneously mourn the loss of a lifestyle I lost access to long ago, whilst also indulging in at-home activities I have lost the ability to do. 

The mass mourning I hear my able-bodied counterparts partake in – over their loss of in-person social contact, of concerts and comedy shows and nights at the movie theatre and pub crawls, of hugs and tickles, of a big vacation they had planned – hits a numb wall of protective indifference in my brain. Some of these are things I barely ever got to experience as an adult, and certainly rarely without physical consequences. Others I lost the ability to do more recently and am still grieving for afresh.

And then there’s the at-home activities they are doing and posting on social media. Things I pine for. The jigsaw puzzles that hurt my neck too much. The DIY projects that I lack the dexterity for. The rekindling of a passion for playing a musical instrument, something that I can technically still do but usually only up to five minutes daily. The snuggling with pets that I am now too allergic to own. The cozying up to significant others and children that I lack. The gluten-filled comfort snacks and alcoholic drinks that my body rejects.

Even the housecleaning and organizing projects that I simply lack the strength for. The cooking that I can’t do. The Netflix binges and movie marathons that I cannot do (on a very good day, I can get through a single movie, but usually not uninterrupted). The reading that I cannot do. The video games that I cannot play. It’s not just one thing. It’s all the things.

And I am finding that even among disabled friends who are benefitting from the migration of education and live entertainment to the Internet, I sometimes feel left out. Due to cognitive and sensory dysfunction, the etiology of which is not totally clear, I am often unable to pay attention to a movie, lecture, or concert for longer than five minutes.

It is impossible to hold any kind of discussion with a healthy, abled person that won’t touch on at least one thing that I invisibly am unable to do. It’s like I’m missing an entire life.

But normally, I am very happy to hear from my abled friends all the same. I love hearing updates. I love calling them. For some reason, my brain has an easier time accessing interactive conversation than static entertainment and I welcome this.

But boy was I unprepared for how rudely my grief would be forced out when all those friends finally found themselves digging into the at-home activities I have been sitting at home longing to be able to do for months. Like I’ve been watching the most delicious cake through a glass display for months, always out of reach, and now my friends are all chowing down on that cake without me.

Photo by Lina Kivaka from Pexels

I’m not new to chronic illness, but I am new to the level of disablement I have experienced for the past couple years. It is an unimaginable grief.

And most of the time, I don’t have to work on imagining it. I just live the life I have available to me – tending to my medical needs, staying in touch with friends and offering counsel, savoring the odd thing I haven’t lost like food or music or baths or dancing a little in evenings or chocolate or walking a few blocks outside.

Or I can try reading audiobooks at my impossibly slow pace just to get the feeling back of being in a kind of flow. It doesn’t matter if I would sometimes flunk a basic comprehension test of something I read minutes earlier. Does it?

Oh, and I can write, albeit not consistently. Somehow that’s been spared too.

And my friends and family didn’t abandon me when I became ill, which unfortunately happens to many people in my situation. My support network is the absolute best.

These things aren’t trivial at all. They’d make me the envy of some of my closest chronically ill friends.

I feel tremendous sympathy for my able-bodied friends who have lost jobs from this crisis, as well as those who can’t find needed food and toiletries in grocery stores, and those who will lose friends, loved ones, or – god forbid – their own lives to either coronavirus, or to other health conditions that the medical system becomes too overwhelmed to treat. I feel rage toward my country’s government for its callousness to the mass death and suffering coming our way.

And as much as I am hurting, I know this – if you’re able-bodied, the grief you are feeling now is a normal and natural response to change.

But when quarantine inevitably lifts, and you throw the first parties celebrating your newfound freedom – consider which people are unable to join you.

They are people like me.

Fight so more of us can.

Nora Helfand is a writer and former research assistant. If you like this blog, support her on Patreon here and follow her on Twitter at @nhelfand.

For more reading on the grief associated with chronic illness, I highly recommend the essay, “The Grief Keeps Coming” by Brianne Benness (who helped me edit this piece). I also recommend psychotherapist Kaethe Weingarten’s piece, “Sorrow: A Therapist’s Reflection on the Inevitable and the Unknowable,” in which Weingarten describes the chronic sorrow of four of her clients with chronic illness and disability. Weingarten defines “chronic sorrow” as “a normal, nonpathological state of pervasive, continuing, periodic, and resurgent sadness related to the ongoing losses associated with illness and disability, in this case not loss of an other but loss of self.”

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I Might Have My Shit Together

It’s funny how people talk about “getting their shit together.” It’s like, does anyone reach that point of, “Hey guys, you know what? My shit is together. There is nothing more to be done here.” But after this year I feel like I’m pretty damn close. I may in fact have my shit together.

Pictured: a person who probably has her shit together. Photo by Tim Savage from Pexels.

I don’t know why this is coming up for me now. My emotions don’t alway process in sync with dates and anniversaries. But maybe it’s the approach of Rosh Hashanah. Maybe I’m hurtling toward a time when last year, I didn’t think I would make it to 2019, and wasn’t sure I wanted to. Maybe my body knows something I don’t.

A year ago I was terrified I would never feel happy or have any quality of life again. My brain was under constant assault. I described it to my dad as “traumatic stress disorder.” There was no “post-“. The worst fate I could imagine at that time was going through another day as bad as the one I’d just had.

In some of my absolute lowest moments, where I could not function cognitively enough to read a book, listen to a song, or play a computer game, I somehow managed to come up with the idea of hiring someone to coordinate my health care. I was scared that answers to my predicament might be locked inside me, and it would take some serious organization to pull them out. My dad found someone fitting the specs and now I have a patient navigator working for me.

Around the same time, a serendipitous discovery resolved my most distressing symptoms – not enough to work or exercise, but enough to not feel like I was being tossed in a washing machine at all hours of the day. Armed now with a few usable hours, I used them carefully, setting about what my friend Bethany calls “constructing a mental prosthesis.” I used the 7am-8am window to plan the rest of my day, since my brain could not function enough to make decisions the rest of the day. That very simple model grew on itself until I was generating daily to-do lists of upwards of 30 or 40 tasks…and going to bed with them all done. I started developing a detailed complex of protocols to make decisions for me throughout the day, with regular engineering to minimize “crashes” (which were just any time I had to make a decision on the spot, exhausting my reserves).

With a trashed working memory, I made it so the only things I really needed to remember were: look at to-do list app for what to do. Look at “Unscheduled Time” protocol if there’s nothing planned in the app. Write any new ideas or desires in the Notes App – my to-do list app scheduled regular time for me to look through these. For the first time in my life, I was following up on every new idea I had, sorting them into lists that I actually utilized. I was writing regularly. I was listening to new music every day. I was contacting a different friend or family member every day. My calendar every day was full of new adventures, albeit often very small ones that accounted for my frequent inability to comprehend a five-minute video. I learned that doing a very small thing is better than despairing that you can’t do a large thing.

And here you thought people won’t work unless they have to in order to eat.

I stopped getting trapped in wishing for what could be. I stopped wishing I was someone else and focused on learning to draw out the gifts I did have. I learned how to break the cycle of decision paralysis, though I often forget. The point is at least knowing how. I’ve learned lessons that I won’t soon forget.

I got in touch with all the people who I was scared my life was too lame for, and made sure everyone knew they were important to me.

I learned to ask for help once I needed help, rather than asking in a way that let on that I already knew the answer. Among other things, this led to actually asking writers to look at my work and to co-writing a play with my aunt.

I realized I could be as proud of the work I put into taking care of me as I had been of my work as a research assistant in the past. I asked my patient navigator to give me a co-author credit on the presentation he made about me for a conference. He said yes. I had, after all, essentially taken my own history for it, putting something like ten to fifteen hours into that part alone. All of a sudden, when I was at social gatherings, instead of saying I had been “working on my health” as usual, I could say I’d co-authored a scientific presentation. About myself! How cool is that?

I quickly found like-minded and like-bodied patients online and dove into that community, and was repeatedly overwhelmed by their kindness and ingenuity. I was surprised and amused by the access I had to prominent advocates I had admired from a distance. “Remember that filmmaker and that author I like?” I tell friends. “I talk to them every day now.” In fear and wonder I started properly nerding out about my medical condition instead of running from it. I fought self-stigmatization telling me not to identify with a life of illness, and wondered how people that brought me so much laughter and validation could be considered a problem.

I set tough boundaries with people around me. I stopped fearing being too much. I let myself be difficult and a handful sometimes. I realized that I was still easier company than the people running my country who made everyone in the world deal with their shortcomings. I stopped lying about how well I was and letting those lies hurt me and confuse others.

I watched my country and planet start the descent into fascist mayhem. I despaired over my government’s indifference to migrants and needed to do something. But unlike in my college years, I didn’t put disproportionate labor on myself in order to get activists to include me. I accepted that giving money can be the most strategic and sensible thing, if not the most gratifying.

I got my family relationships in order and taught my immediate family how to support me with my illness. We started replacing hurt feelings and resentment with humor, organization, and acceptance of conflict. I instituted weekly meetings for us to tackle the ins and outs of my medical care, and it turned out that my care is so much work that this was really warranted, probably from the beginning. I kept weekly assignment charts, and by my count we’ve gotten *forty-five assignments* done since our first meeting on June 14. The medical system is good at creating work for us! So is my body.

I learned that I am not synonymous with my feelings. I learned that objective observation can yield answers if you let go of the outcome you’re attached to. I stumbled upon mind-blowing insights by accident, in a spirit of science. I developed a “spidey sense” and sussed out problems in my medications and environment one by one. I gained my parents’ support as they saw that my suspicions were often correct. I let my body make the rules when medicine didn’t have a clear-cut answer. My body became the boss.

It’s just hitting me how proud I am. At my worst moments in 2018 I remember clinging desperately to a voice I thought I heard from the future that said, I can’t believe how well it turned out. I’m brought to my knees. I don’t know why I was spared. I know I can be a bit of a cheeseball about these things. But I really do make an effort to not exaggerate what happens to me medically. And I know in my bones that whatever I lived through last year was unutterably, intolerably bad.

I feel blessed and pinch myself every day and want the world to know. And yes, I am disabled and I need to bitch about it a lot. Both are allowed to be true. In fact, I think the latter allows the former to happen.

I came away from hell with the intimate knowledge that the human spirit in me, what makes me me, cannot be destroyed. It is worth protecting and caring for. And it also has its shit together.

Nora Helfand is a writer and former research assistant. If you like this blog, support her on Patreon here and follow her on Twitter at @nhelfand.

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Use It And Lose It

Writing and editing this piece revealed to me some defensiveness. There is a strong impulse to tell – my body does this and this is why – and not show. I think I might know part of why. It’s what I felt I had to do, continually, when friends, medical staff, and authority figures repeatedly failed to mirror to me the experiences of my divergent body, to show me that they were real. Perhaps I appeal to an invisible authority in my writing to hand down some explanations, some realness that I was not afforded. The experience of worsening with exertion rather than improving was so primary to me that I assumed everyone knew what I was talking about. I question what is real even now.

Photo by Lukas from Pexels

One thing I wonder if healthy people experience is the sense that activity is actively weakening you rather than strengthening. I have felt before that exercise was eating my muscles or brain.

I started noticing this in maybe my sophomore year of high school. I described it as the “gunk” I would get in my legs after track practice that meant I wouldn’t recover properly from the workout. I knew instinctively that if I rested and avoided running on hills, I would run better than if I did the hard workouts. I remember the almost ill feeling that would come over my legs as I slogged through an interval training session, and the dismay when I would be slower and weaker the next time I ran. My freshest legs and best race times always came at the beginning of the season. “She can run one week, but can’t the next!” my coach once mused.

Why wasn’t I assigned an easier workout regimen? Looking back, this idea seems reasonable. Yet I hazard that it would have run very counter to the culture of competitive running. The standard mantra of athletics (perhaps of society as well) seems to be “no pain no gain”; you push through pain to ultimately achieve resiliency and benefit. You certainly don’t ask for a special exception to be made when everyone else at your level is working so hard. My struggles were easy to typecast as, at best, part and parcel of the painful sport of running – or, at worst, a weakness of character.

When my coaches doubted the urgency of my body’s cries for relief and kept pushing me to do more, I began to question it too. I remember that during my more disastrous workouts, I would write parts of a poem in my head called “The Cross Country Coach’s Lament,” from the perspective of an anguished coach chiding an obstinate runner. “The time that on the clock does read / it matters not to me” is the line I remember the best. “You’ve surest longing in your eyes / yet run so _____ly.” (The adjective never got filled in to my satisfaction.)

However, when the stakes became higher than running a good race, I was forced to contend more seriously with this problem. At the onset of my severe illness, I became so intolerant to exertion that the effort of standing to watch part of my teammates’ race could mean I missed school for the entire next day. I was sleeping up to fourteen hours a day and was scared to shower, feeling that I would pass out. For someone who used to be able run a mile in under six minutes, this was a big shock. I had been diagnosed with celiac disease and inflammatory bowel disease (IBD), but the people I met in online support groups with these conditions didn’t share my “exertion intolerance” problem. Again I found myself the freak, but now I was even a freak among freaks.

The fatigue improved dramatically with biologic treatment for the IBD, but when I tried to gradually return to running the following summer, something seemed off. A leisurely 2- or 3-mile jog at 12-minute-per-mile pace would spike my heart rate to 180. I would finish with a lightheaded, beat-up feeling, and not experience my previous “runner’s high.” I had built up to this level of activity at what was, to me – a former varsity athlete – a painfully slow pace, having started with just walking one time around the block per day and increasing to two blocks when that got too easy. Why wasn’t I feeling stronger? Was this out of proportion to the deconditioning (medical-speak for loss of fitness after long periods of bedrest) that I experienced when I was very ill?

Life with chronic illness flies in the face of what we are told about our own resiliency. I do believe it’s important to try new things fearlessly as often as possible, but to also trust my body and know that it often worries due to very real past upsets. The various ways I’ve learned to protect my body – certain postures, avoidance of certain situations like standing in line, minimal hair and makeup products, saving mental energy by being a bit “rude” – are all very easily stereotyped negatively unless viewed with an open mind.

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Something To Hold Onto

I guess I want to tell you it’s getting better in some way. Maybe there are more superficial ways that will become more manifest in time. The physical therapist who had a plausible explanation for why I have failed over a year of pelvic floor physical therapy and thinks she can help. The fleeting, sputtering moment of clarity where I told my parents that I was relying on the executive functions of a mentally and physically ill 24-year-old with long-standing ADD tendencies to manage the care of a complex patient – the aforementioned 24-year-old – and we regrouped and got some help with care coordination. The unknowable time at which the anhedonia lessened and I could truly enjoy a few things again, for who knows how much more time. The support of parents who allow me to breathe a bit and stop being a full-time advocate who cannot advocate.

But I feel I do myself and others a disservice by romanticizing. For months I’ve been wandering a weird mix of trauma, hypersensitivity, depression, aggression, and brain fog, such that I often cannot even remember enough to describe how my day went but know in some vague sense that it was bad. I weather weird assumptions about my quality of life based on physical symptoms or labels, wanting to scream that I would cut off all my limbs if it meant I get my brain back. I have learned what it means to spend hours of a morning wracking ones brain for how to do a morning routine, then 10 minutes of that morning trying to attend to a 101-level lecture online, then the rest starting to go to the gym but being so agitated I have to get out. I have learned that maybe it’s ok that this is the first time I’ve felt able – as in, focus-wise, genuinely capable – to write a blog post since the last one. I have learned that even the fogginess isn’t so bad when your mind and body remember how to be calm. It seems not so long ago that mine truly did.

I have wielded diagnoses as a Something To Hold Onto, validation from a mystical board. Of course I don’t feel well, I inform you. I have celiac disease, Crohn’s disease, postural orthostatic tachycardia syndrome, lichen sclerosus, secondary adrenal insufficiency, and mast cell activation disorder. All of these are real; laboratory tested. Yet it’s an armor against how none of this explains what is going on; why I sometimes find even good and pleasurable thoughts torturous, like fingers raking into lava veins of nerves; why I feel worse and worse mentally despite no major demands on me, some improvements in physical conditions, and few other life stressors; why I scream threats at loved ones and then minutes later am relaxed and joking; why I haven’t truly slept through the night since December; why even gentle medications or supplements often lead to agitation and dysphoria. I haven’t had a single break from reality through all of this, always excruciating awareness that I sometimes wish I had some escape from. I don’t want to see myself behaving as I do. I don’t want to see others wanting to reach out and to not have the heart to tell them that lately, company often makes things substantially, critically worse. Harder. On. Me. Not. On. Your. Ego. Insistence on what I know I need, attunement to a soma trying perversely to protect me, becomes paramount.

I both hope I remember and forget this time at some point. At times I’ve looked back at my early days of illness through Facebook memories and feel generally what I should; compassion for the person involved but great relief and wonder that I am not her anymore. How odd that now I would gladly trade my current situation for hers.

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The Gray of Individual Worry

In my previous post, I wrote about how worry and pedantry can consume you after experiencing an extreme illness. I want to talk a little more about what that can look like.

In September of my senior year of high school, I developed a very sudden, progressive illness. Over three months I lost tolerance for any exertion, not to mention dropping a quarter of my weight, spiking fevers and night sweats, growing erythema nodosum that ate through my lower legs and made walking very painful, weathering near-constant abdominal cramps and frequent diarrhea, spitting into a cup every few seconds from waterbrash, and enduring vast personality changes with intense depression, anxiety, and weeping. In the month prior I had been quite healthy; cheerfully reading college guides, training with the cross country team, and researching alternative diets.

About a month pre-illness, charging up Steens Mountain.

In late November I had gotten so bad that I was finally hospitalized. In the hospital a surgeon consulted with me about having a colectomy, where my entire large intestine would be removed, as it was so diseased and ulcerated that it may have been beyond repair. Fortunately, a biologic drug rapidly reversed the inflammation. After I was discharged from the hospital in early December, colon intact and symptoms dramatically improved, my parents and I were still traumatized by how drastically our life circumstance had changed in a few short months. They had both had to cut their work hours significantly in order to care for me round the clock. We had been told that this was caused by a chronic condition that would require indefinite management.

It became our mission to somehow ensure that I would never suffer like this again. We wanted a complete cure of something that I had been told I would now deal with for the rest of my life.

And so, the heightened state of alert continued. I kept a symptom diary documenting every food I ate and every bowel movement, which my parents would read and review. I followed the strict Specific Carbohydrate Diet protocol that I had started in October, eating a handful of the allowed foods from the intro stage and only introducing a new food every four days. My mom spent the better portion of her days cooking for me, making homemade yogurt, and sourcing unconventional ingredients. I saw an array of alternative practitioners – an acupuncturist, a homeopath, a naturopath, a psychic healer, a BioSET expert. Any activities or outings with friends were computed well ahead of time in terms of food needs and parental support; I could do almost nothing truly spontaneously.

This is one book cover I’d be happy to never lay eyes on again.

As I slowly regained my stamina (which I’m not sure the practitioners or our fanaticism actually had much to do with), I drove myself mad with worry. During that time, I had a nagging belief that I had caused my illness somehow – perhaps through poor diet, exercising too strenuously, stress, or moral failing. This was my way of feeling in control; if I could cause an illness, I could also reverse it somehow. But this logic also meant that any minor slip-up could be the one that sent me into another 3-month horror show of severe infirmity. If I accidentally ate something not allowed on my strict diet, or if I failed to tell an important detail to my homeopath, or if I overexerted a wee bit and was tired the next day – that mistake, to me, meant a one-way ticket back to hospital.

Additionally, my time in online support groups for illness had overexposed me to New Age, mind-controls-the-body theories – think Rhonda Byrne, Bruce Lipton and Joe Dispenza. I took it all way too literally. I believed that worrying too much about illness would itself make me ill, which trapped me in a bizarre infinite loop. I remember the anxiety would particularly come on at night, and I would sit awake crying to my mom about how scared I was, and getting scared because I was scared. I think it came on at night because the day I had been hospitalized, I had gone to bed feeling stable and awoke screaming and feverish later in the night. The night was the unknown, the leap of faith; I thought I would go to bed normal and wake up with no intestines. And that it would have been my fault.

None of these fears quite ended up coming true. While I continued to weather great difficulties with my health over the next six years, I never once got as severely ill and dependent as I had during that first flare-up. I had to accept that maybe there was no real way I could have prevented this; that the cause was just not known. Or further – that even knowing the precipitating cause doesn’t always mean much as far as how to reverse the illness. (For example, many people who have mast cell activation disorder developed it after an infection like Lyme, but Lyme antibiotics are usually not sufficient to treat the disorder.)

Starting around April of 2012, I gradually returned to a normal diet (except for being gluten-free due to a diagnosis of early-stage celiac). I let myself exercise more, starting with just one lap around my block and building to 3-mile jogs. Although my body did not respond as well to the exercise as it used to (possibly due to anemia), it was clear that I wasn’t doing something harmful. Slowly but surely, the circuitry of fearing my every move broke.

July 2, 2012 after one and a half miles of walking. I was a bit deconditioned.

Yet something had shifted in me by this time that has never fully resolved. Perhaps it was the natural inversion of the “healthy” version of myself pre-illness who still had some very questionable beliefs about what allowed her to be happy, and why people get sick or unhappy. It’s often not the “illness itself” that we fear. It’s what we associate with it; perhaps a loss of identity, a loss of community or friends, a loss of self-expression, a loss of ability to provide for oneself or others. I will address this in a future writing if I am able.