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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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Shout Your Pain!

Photo by Pixabay from Pexels

On May 2, I was offered some rare hope that a pelvic pain condition I had struggled with for many years could improve. My doctor put forward a solid plan for what we would try, with the option of nerve block injections if more conservative treatment didn’t work.

I felt tremendous relief when she told me this. She took the condition seriously. She acknowledged that it was a major concern for me. She knew I had had years of physical therapy with disappointing results. So of course, I left with more pain than before I came in.

Wait, what? Yes, I believe that offering hope to a patient in pain can amplify the pain temporarily. It’s pain that one has become resigned to, and blind to. To exist in a body in pain can cause you to downplay it after a long enough period of time. Action and struggle have failed to liberate you, and they only serve to pain your pain, add alarm to alarm.

An unfortunately common camp of pain treatment attempts to pathologize our very normal reaction to the onset of pain. We are listening to our somatic alarm system and trying to convey its message, only to be accused by those claiming to help us of over-focusing on pain and thus perpetuating it. The accusations are rarely so agitational as I’ve laid out. They come with a saccharine, compassionate face, making them all the more maddening. “Poor thing, so stressed,” they muse, veiling the judgment that you’ve somehow stressed yourself into a medical fiasco. “You’re so much better,” they cheer, as your tissues move to their satisfaction and you grimace from the pain that is blacking out your ability to respond.

It is very easy to convince someone that they are at fault for their situation, even simply by omission. Our evidence-based treatments have been applied, you’re still in pain; well, what’s wrong with you? Didn’t you love all that science? Are you being anti-scientific? Get your mind off the pain and get back to your life.

“But, Nora,” the pain whispers. “I’m still here. I matter.”

In 2013 I allowed myself to be subjected to exercise testing at the OHSU Human Performance Lab. I had been experiencing widespread pain for six months and fatigue for longer. I had to run on the treadmill until I reached maximal effort – a VO2 max – and endorsed that I was too tired to continue. The doctor and his assistant took a blood sample, hooked me up to some electrodes and a blood pressure cuff, and stood me on the treadmill with a spirometer in my mouth. The treadmill was started, and at regular intervals I was asked to rate my perceived level of effort on a scale from 1 to 10.

I said 1 or 2 at the beginning. The speed and incline increased, though I don’t think the pace was any more than twelve minutes per mile. I started to feel uncomfortable. My chest tightened, my muscles burned and yawned, my face flushed hot. I said a 5 or 6. I felt that I would run myself into the ground. The doctor asked if I thought I could go long enough to get just one more reading. I gasped a yes as the room spun. I heard a “Got it!” and then the machine was stopped.

I felt the weight of the workout crash down on me, and the stunned doctor’s eyes on me.

“You said a 5 or 6 when the machine was showing us that your body could not continue any longer,” he said.

I didn’t say anything.

“You are drastically under-perceiving the stress on your body,” he marveled.

Under-perceiving. I had thought for all this time that I was over-perceiving. Others seemed able to accept pain and get on with their lives; why wasn’t I doing that? I guess I was at a 10 and thought I was at a 6. Maybe I also thought everyone else was at a 10.

Every year following that treadmill testing I would receive a new diagnosis – postural orthostatic tachycardia syndrome, lichen sclerosus, vaginismus, adrenal insufficiency, mast cell activation disorder. These were the diagnoses that came up when I barely complained and hid many concerns from the doctor, convinced they could not help. What would they have come up with if I complained a lot? What if I complained in proportion to the problem? Well, I suppose that would mean complaining all day.

I hope I can find the strength to pain my pain more. Let it find its voice. This effin’ hurts and it’s okay.

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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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Coming Up For Air

Photo by Engin Akyurt from Pexels

One of the core cruelties of chronic illness is that the condition itself can muffle your ability to describe what is happening to your body and brain. In my worst moments over the past year, I have often spent weeks to months with my powers of expression muted, the words bobbing up transiently for air before disappearing back into a preverbal ether. I was “in there,” but there was no telling what would bring me out.

When significant improvements occur, I can suddenly speak, but by then the problems are often past tense anyway. From an email to my doctors after one such breakthrough: “I woke up feeling ten times better mentally than I ever do in mornings. There was less fog, less low motivation, less depression and anxiety, less weird dizzy or swimming feelings, less hypersensitive emotions.”

I had not been able to arrange those various symptoms into a coherent list for months, except for during small rare bursts of adrenaline. The symptoms would seal me in and prevent me from effectively seeking medical help, let alone support from friends, the actualization of writing down my experiences, the empowerment of learning about my conditions and meeting others who live with them, or really any kind of enjoyment or pleasure at all.

Alone with my infirmities and demons, I was backed into a corner to either succumb or recognize my worth and slowly dig myself out. It was adapt or die. When you spend any period of time so limited that the mental energy to watch a five-minute YouTube video often eludes you, you learn to cut the bullshit real quick. The little embarrassments I had over having such excessive needs just couldn’t be taking my energy anymore. Nor could anger at not having a different situation, someone else’s life. Conflict takes energy, including conflict with oneself. I am becoming better at sensing whether something is really worth my limited resources.

I don’t have a job. I am bored and at home a lot. I don’t do much. But I also do a lot. I work damn hard in ways others won’t see, and that sometimes I don’t see either. And yet, sometimes just existing and knowing your friends and family know you exist is enough.

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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.