I am immunosuppressed and disabled.
I am #HighRiskCovid19.
In “normal time” — whatever that used to be — I am an impoverished, unadorned celebrity (not even an oxymoron) one year into home ownership of a rickety falling-apart house in Sacramento. I am also transgender, a cat they-dy (see what I did there?), and I love my plants.
I am still all of these things. I still have a house. I’m still poor, chronically ill, disabled, and trans. I still love my cats and plants. Except now I am also carrying an unborn egg of anxiety in my chest, waiting for it to crack.
The anxiety is nothing new for me, but its constant companionship, a new permanent fixture in my chest, is something I’m still adjusting to.
This is the new “normal time.”
The only thing that has changed is, well, everything.
Months ago, BC (Before COVID), when I last saw my rheumatologist, we discussed changing my main treatment — a specialty biologic drug given in an infusion clinic — to a different one I could do at home: a pre-filled injector pen. As with any big medication change, I planned to think about it for at least six months before making my decision.
Well, six months became one month because pandemics tend to change a lot of plans, in case you haven’t heard. I made the switch; both to allow me to stay home and protected, and so that the saline that would have been used during my infusion could help hydrate coronavirus patients in hospitals instead.
Not surprisingly, the health care system took a long time to process this switch to the injectable biologic medication. By the time my new injection arrived by mail I had missed my last scheduled infusion, which I had cancelled in anticipation of the new medication.
The delayed treatment meant my body reacted in the only way it knows: by revolting. Previously tamped-down symptoms began to roar back. Worsening pain, fatigue, stiffness, insomnia, trouble breathing, cognitive decline — an intensity of symptoms I haven’t felt in more than five years. In the middle of a deadly pandemic, no less. My symptoms were so bad, and so closely mimicked those of COVID-19, that for more than a week, I was convinced I was on the verge of dying.
The anxiety egg in my chest threatened to crack.
The key to managing ankylosing spondylitis is staying on top of disease progression; and any return of AS symptomsthat were previously well-managed terrifies me. Switching medications is never guaranteed to work. If this new biologic fails, I might not be able to switch back to the other drug I was taking, because I could develop antibodies to it.
Patients like me live in constant fear of a new drug not working, resulting in a cytokine storm until we can tamp it down again. It almost always gets worse before it gets better.
Sound familiar? Cytokine storms — like those that have been reported in some COVID-19 patients — are a big part of living with an inflammatory disease like ankylosing spondylitis.
Early on in the growing threat of the novel coronavirus around the world, as I read about this COVID-19 cytokine storm, I brought up with my friend and fellow advocate, Jennifer Walker, the odd similarities between COVID-19 and living with a type of inflammatory arthritis. We know what inflammatory cytokine storms are all about. They are our realities in “normal time.”
In my own body I am ever trying to “flatten the curve” — to get AS inflammation under control before it becomes uncontrollable. It is always a race against the clock as I make phone calls to my doctor, the pharmacy, my doctor, insurance, then the pharmacy again to get a new prescription filled to fight the inflammation.
It can sometimes take weeks to get a new drug prescription filled. A lot can happen in two weeks.
Just like COVID-19’s exponentially fast infection rate, ankylosing spondylitis inflammation can unexpectedly double in intensity within hours, minutes even. Timing is everything. Having the right treatment is everything. Flattening the curve is everything.
And just like COVID-19, AS affects everyone differently. No single treatment works well for everyone. Treating COVID-19, too, seems like a shot in the dark right now. With any luck we might one day hit a bullseye and know which path to pursue, which cocktail of medications to use.
In a way, because of this constant reality of unknowns, the world now knows what it’s like to live with a chronic disease: There’s no right answer and every day is a different kind of scary, a race against time and bell-curve calculations. The big difference now is that everyone is collectively experiencing the kind of anxieties and fears that chronic illness patients experience regularly.
I have often said — regarding living a disabled life — that I want to live, not just survive. Yet, I am often pushed into survival mode with new trauma.
I entered survival mode at the end of February when COVID-19 became a real threat. I began sprinting around the track, trying to get ahead of the threat of the new virus even though I knew that was impossible from the starting blocks.
For weeks I consumed COVID-19 every waking moment.
Knowing something — anything — gave me that familiar feeling of power that comes with digesting knowledge. It is a feeling of having control over something.
Knowing something — anything — provided me with a path to help other people, because I am an advocate and an activist. Staying aware means that I support my community better.
Knowing something — anything — equipped me to survive.
However, living with chronic disease has taught me that you can’t sprint forever. And that knowledge tells me you simply can’t moderate the constant mental and emotional terror of a pandemic as it circles the globe, possibly in multiple waves, by running directly into the mental storm while refusing to take care of the daily drudge of living. No one can sprint through the unknown timeline of COVID-19, with no reliably predictable end date to this global clustermuck.
I find myself in that familiar chronic disease-esque space again now. A desire to pull myself out of the hamster wheel of constant motion and start living again.
Now? I’m slowing down and beginning to find my pace.
I’m shifting from being in survival mode to actually living again.
I’m shifting into mental mitigation mode, and hoping my body can follow suit. After all, there’s an egg of anxiety about to explode in my chest that is motivating me to slow down.
Thanks to chronic disease, I have become an expert in managing perpetual anxiety — knowing, deep down, that this egg might never fully crack. And maybe that’s the new “normal time” I am growing used to. But this time, it must happen collectively. For survival’s sake, so we can all learn to live together in this new time.
So I am gently holding onto that egg-in-chest feeling and acknowledging it for what it is. Perhaps my public acknowledgment of this new perpetual anxiety can help others shift slowly into emotional mitigation with me.
Adjusting to the mitigation phase, I am still anxious, I am afraid, I am worn out, I am angry. But I am no longer reading the news all day, every day. I haven’t devoured a research study in weeks.
Now, I am adjusting to the new normal, because I know that scarfing down new information daily is not going to change the things I have to do to survive in this moment.
Now, I am living again. I have reached a new normal. I fast-tracked myself to this point by absorbing so much data, so many stories, so many news interviews, and connecting so quickly and intentionally with others on the front lines. I feel fortunate in a way that living in a constantly changing body at the mercy of an unpredictable chronic disease has allowed me to adapt quickly and easily.
I’m beginning to enjoy life again. I had a good mental health day recently. I wanted to do so many things. I am nurturing a stray cat. I am nurturing a new partnership with someone I love. I am sewing masks. I am watering plants. I am watching TV. I am talking with my psychiatrist about additional anxiety treatments.
I am learning to embrace that egg in my chest and allowing it to serve as a gauge of my needs. My anxiety tells me when I need to talk to my plants and birds. My anxiety reminds me to find joy, to connect with friends. My anxiety reminds me to eat, drink water, bathe, change the sheets.
My anxiety allows me space to remember why I need to stay home, especially as a #HighRiskCovid19 person.
In a way, my anxiety reminds me that I have adapted to the new normal of COVID-19. And just like during “normal time,” I’m holding that slowly cracking egg as I wait to see if my new medication will work.
And I’m realizing that all I have to do right now is live, not just survive. Just like in “normal time.”
Get Free Coronavirus Support for Chronic Illness Patients
Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.