CN: Extensive discussion of the experience of chronic illness, the emotional experience of living during the pandemic, brief discussion of ableism, grief, and financial hardships.
The era of Covid-19 has been a strange time for folks with chronic illness. For anyone with pre-existing conditions that make catching the virus more dangerous, it has been a scary time with the already high stakes that surround our health getting even higher. But recently, everyone else's world has gotten a whole lot closer to the reality of what it’s like to live with chronic illness and as a result, they too are taking on the challenges we've faced for years. Folks with chronic illness are on average more at risk and also more prepared. We are more anxious and also more skilled in the emotional management necessary to cope with such a crisis.
I’d like to share some of my hard-earned lessons that have come from the last 5+ years of managing multiple chronic illnesses and a disability that have since proved incredibly useful during the pandemic.
While the manifestation of chronic illness is absolutely not binary, it’s frequent that if the onset is gradual, then there is a threshold where it’s no longer possible to ignore the illness, at which point your life is irrevocably changed. The consequences of pushing through your symptoms become more serious than the consequences of missing work or skipping responsibilities. Your body may not be even physically capable of performing your normal tasks, or attempting to do so could actually threaten your survival. When prioritizing your illness becomes non-negotiable, every aspect of the structure of your life changes, whether you want it to or not.
There is also a period of time after this tipping point where it’s extraordinarily difficult to accept that there is no simple way to get back to “before I was sick.” In the beginning, there is a lot of grief, a lot of anger, sometimes denial. You don’t want this to be your reality. You want it to disappear. You want to “just go back.” But there is no guarantee that it ever will go away and in some cases, the testing and diagnosis process will confirm that it won’t.
I had to learn to actively practice acceptance of my new life and my new normal. No amount of getting frustrated or resisting reality would make it change, and doing so just made life more stressful and upsetting. I had to learn to trust that I could find a way to integrate the new necessary changes while still living a fulfilling life, which required me to open myself to these changes.
But this process isn’t just part of my life experience, it’s a habit I’ve had to develop. Because my set of conditions is very dynamic, new additional health issues arise regularly, and each time requires a new round of investigation, experimentation, and rounds of habit-building to integrate those tools into my life. The more times I have gone through this process, the easier it has become to get through the “resisting change” phase and move on to the acceptance phase.
As a result, when the pandemic turned our world completely upside down, I grieved and resisted and stressed like everyone else did but then within the first week or two, I let go and leaned into our new reality. I actually felt confused when I heard other people ask, “What is the first thing that you’re going to do when social-distancing is over?” I realized that this question was in the same category as “What would you do if you got better tomorrow?”. Focusing on the desperate desire for a shift that we have no control over and have no way of knowing when it will happen seemed more stressful to me than assuming that our world had fundamentally changed for the foreseeable future. I, instead, tried to put my focus on the changes I would need to make to my life structure to make that shift physically and emotionally sustainable.
Changing Your Structure to Meet Your Needs
This process of restructuring my life to fit my new long-term needs was an integral part of moving toward acceptance. As long as I was trying to meet my new needs using my old structure, I wasn’t likely to meet my own expectations of myself. If my goals required me to have a different body than the one I had, I would never achieve that goal and would live in a perpetual state of failure. I needed to pick new goals.
One of the first steps in that process was de-emphasizing the importance of productivity. When you deal with a chronic illness that’s as variable as mine is, you are going to have some days where you can work for many hours and other days where you can’t work at all. Some days doing one hour of work, or making sure to wash some dishes, or just taking a shower, are huge achievements. On average, you aren’t going to maintain the same level of productivity as a healthy person can. As a result, it’s important to decouple your sense of worth as a person from your level of productivity.
The same is true for attempting to stay productive during this pandemic. Life is challenging in many new ways, even the easy version of social-distancing is incredibly hard, and overall, our mental health is pretty terrible. We are not going to be able to maintain the same level of productivity that we did before the pandemic. Some days, we aren’t going to be able to do anything useful at all. I had to learn how to focus on my inherent value that I have simply by virtue of existing, and to recognize that I contribute a lot of value in forms that aren’t recognized by society as legitimate because they are not monetizable or easily translatable into institutional rewards like promotions or prestigious awards. I focus on the fact that I am valuable regardless of my level of output.
Finding New Ways to do the Same Tasks
Shifting my life structure to prioritize my health over society’s definition of success required me to re-examine my assumptions about the way I was getting my needs met or how I was doing basic tasks-- chores, socializing, transportation, hobbies-- and ask myself if there was another way I could get the same need met that wasn’t so taxing on my body. Instead of spending time and energy on taking the bus to a coffee house to meet a friend, was there any reason we couldn’t meet in the grocery store courtyard that was a five-minute walk from my house, or even at my house? Instead of washing a big batch of dishes all at once like I used to, could I wash dishes for just five minutes at a time, a couple of times throughout the day?
Not all of these changes were simple. I lost several hobbies I deeply cared about and let go of the potential career I thought I would be pursuing, all of which I needed to grieve for a long time. But losing those hobbies didn’t mean I couldn’t find other hobbies to focus on to bring me joy, and losing that career didn’t mean there weren’t other forms of work available to support and fulfill me.
As much as possible, I shifted away from tasks that relied heavily on leaving the house, standing, or using my body a lot, and toward tasks that didn’t require me to leave the house, or that I could do while sitting/lying down. My life naturally became oriented around things I could do from home and things I could do online, or on my computer.
People practicing social distancing are now faced with a similar transition: Giving up the aspects of our lives that involve moving through the outside world or interacting with other people in person and replacing them with ones we can do at home or do remotely that still meet the same needs (to the best of our ability). This transition won’t always be smooth or natural. As I watched my list of hobbies disappear at the onset of my illness, I had to actively seek out new rewarding activities to replace them and make an effort to center them in my life the way my previous hobbies had been before. You may need to go through a similar process in adapting to social distancing long-term.
The Value of Remote Options
When you are faced with the necessity of spending the majority of your time at home, the value of digital tools that enable remote versions of socializing, working, school, errands, and live entertainment, increase for you dramatically.
For many folks with chronic illness, social media is the only place that they can access large groups of other people that share their experiences. Even if there were a group of folks with your specific condition already established in your specific city, the extra resources required to leave the house with chronic illness means that you may never meet these other people. Friendships are started, developed, and strengthened online, providing a source of connection we may have not otherwise been able to get.
Jobs that can be done remotely and therefore at home are worth their weight in gold, as are jobs that offer the option of flexible hours so that as your level of productivity fluctuates, you can focus on your work during your good times and take breaks during your bad times. Similarly, accommodations like offering digital versions of schooling, delivery systems for groceries and medications, and online streaming of live performances open up a whole world of possibilities for folks whose chronic illnesses limit the amount they can leave the house.
Now that everyone has to stay home, society has prioritized developing remote versions of as many different activities as possible as well as flexible schedules in order to maintain some level of functionality. Everyone is discovering just how incredibly valuable the practice of accommodation is, in particular how fulfilling remote and digital systems are when you don’t have the option of participating in them in person.
The Necessity of Government Assistance
Because we are humans and we are not uniform in our needs, strengths, or weaknesses, not every person managing chronic illness will be able to work even a remote job, or work enough hours to support themselves financially. Their symptoms may be too severe to manage in addition to a workload or if their sickness appeared later in life, the skills they acquired before getting sick may not translate to any kind of remote work, and schools and classes may not provide the necessary level of access to acquire new skills easily.
But people need money to survive and most people won’t be able to receive enough money from assistance from family or friends to stay afloat while unemployed. The availability of government assistance is crucial for the survival of anyone who’s health or ability level precludes them from or reduces their capacity for employment. For most of my time during formal employment, I was physically unable to work more than 24 hours a week, which meant I depended on SNAP benefits and state-funded health insurance to get by. While I have not had to apply, disability rights activists have been campaigning for years to make qualifying for Disability Support from the government more easily attainable, and to raise the amount paid to match the current cost of living.
And just as not every chronically ill person will have a skill that translates to remote work, neither will every person whose employment has been negatively impacted by the Stay At Home orders be able to find a new remote job relevant to their work experience. Having millions of people lose their entire income simultaneously meant that stimulus checks from the government were the only way to avoid dangerous levels of poverty (which we will need more of, with fewer restrictions around who gets them, in the near future, in order for the strategy to actually work.) We all suddenly have much more personal incentive to advocate for a version of Universal Basic Income.
Strangers’ Denial of Your Daily Reality
A mind-boggling aspect of living with chronic illness is that because our reality is not accurately reflected in the media and many of our symptoms are invisible, the belief that our illness (regardless of which one you have!!!) is not real or is all in our head, is incredibly common.
The condition that has the most impact on my daily life is Ehlers-Danlos Syndrome (EDS). Many of my friends who also have this condition have shared with me stories of encountering doctors who flat out deny that EDS exists, even after they have received an official diagnosis from a geneticist. Actor Jameela Jamil best known for her role as Tahani Al-Jamil in The Good Place is one of the few celebrities who has been open about having EDS and as a result, she was the target of a barrage of articles accusing her of faking her illness for attention. The fact that her illness was EDS was actually cited as “a red flag” and evidence that she was likely faking because apparently having a multi-systemic illness that constantly varies in severity is suspicious.
When people say that your illness, which impacts literally every single aspect of your life, which if untreated could even threaten your survival, isn’t real, it doesn’t just cause an immense amount of anger and helpless frustration. It can prevent you from getting the medical care that you need from doctors, or the accommodations you need at work or school in order to function, and it can result in individual people ignoring your illness-based needs, thereby putting you and your health in danger as a result of their stubborn ignorance.
With the influx of protests and conspiracy theories regarding the measures taken to prevent the spread of Covid-19, people who have thus far been healthy but are now confronted with a very real threat to the health of everyone they know, are getting a first-hand look at what it feels like for populations of people to deny the importance of your safety and health. Our culture’s insistence on prioritizing our own needs rather than offering simple accommodations to other people, the widespread belief that incurable illnesses with potentially deadly consequences simply don’t exist or aren’t worthy of protecting against, and the faulty assumption that ill-health only falls upon people who are not strong enough or not moral enough to withstand it, shows up in both the daily discrimination folks with chronic illness face and certain groups’ resistance to necessary disease prevention.
Grieving and Living Simultaneously
I will not sit here and pretend that the adjustment to any of these life practices is easy or instantaneous. This process of adjustment most chronically ill folks have had to go through took us a long time, and most of us also balked and fought and resisted when we were first faced with the change. Grieving everything that you’ve lost is a necessary part of the process that cannot be skipped or sped up.
However, another skill that we chronically ill folks have mastered is the art of grieving while moving full speed ahead with life changes, new plans, and new solutions. Usually, you find out that your sickness is chronic after it is worsened to a point where it can no longer be ignored, which means you don’t have time to stop, rest, and sit with your feelings about this new development. You have to keep attending doctor’s appointments and scheduling procedures and trying treatments and managing your symptoms. The acts of grieving, letting go, and replacing what you lost with something new, become one overarching process that you are constantly managing.
While some people have way more free time than they ever possibly wanted as a result of quarantine, others were thrown into their new world of being their children’s teacher, and working from home, and spending every waking second with everyone they live with, and managing financial crisis’, and a whole new set of protocols for each and every time you go outside, with absolutely no downtime in which to adjust or even react to the incredibly tall order they were saddled with.
Regardless of how easy or difficult (relatively speaking) your life circumstances have been since the onset of the pandemic, and regardless where you fall on the scale of bored to beyond busy, I recommend finding moments to acknowledge and validate your naturally occurring grief as you go. It’s okay to compartmentalize that grief temporarily for when you need to be present and functional but make sure you’re storing it for later rather than trying to push it down, out of existence.
Thanks to Tori Bidwell and United Nations for the illustration.
As I’m writing this article, a significant portion of the country has re-opened parts of its economy. My state is in Phase 1 of re-opening as of yesterday. I’m not a health worker or an epidemiologist but based on the reading that I’ve done, my understanding is that the process of re-opening the country and progressing through the different phases of prevention will likely not be linear. We’re likely to have to go back to stricter social-distancing in the fall when the cold weather speeds up the spread of disease, if not sooner depending on how the virus responds to the summer heat. This fluctuation in levels of precaution is likely to continue changing until we have an effective vaccine and accurate testing that are universally accessible.
In some ways, this non-linear progress is much harder than if we stayed at the same level of social-distancing throughout the whole process. Each time we change to a different phase, our lives will need to be reassessed and readjusted again. We will get some things back but we may lose them again later.
As a result, I highly recommend assuming that our lives will continue to be volatile and unpredictable for a number of months to come, and making whatever adjustments you need to/are able to, in order to manage the consistent unpredictability.
Many of the lessons that I listed here can’t be learned simply by hearing about them. You have to do the messy work of acquiring them yourself. But I’m hoping that knowing that they exist can give you at least a direction to follow until you find the specific pathway that works for you.