We’re moving to another state for the sake of our health — and our neighbors’ too.
I live with hEDS, the hypermobile subtype of a connective tissue disorder called Ehlers-Danlos syndrome (EDS).
Its impact on my life varies. But for me, it mostly manifests as chronic pain, caused by issues with the curvature of my spine and my joints being a bit weaker, leaving me prone to sprains and dislocations.
In other words… I bring a whole new meaning to “bend and snap.”
All in all, my condition was manageable before the pandemic. For many of us with hEDS, “motion is lotion,” and we’re able to find forms of physical therapy that work reasonably well for us.
I was lucky enough to find types of strengthening activities that helped me, and I took walks pretty often to keep up my stamina. I also used myofascial release to help with my pain.
It was going okay! But then COVID-19 happened.
Some context: I live in a one-bedroom apartment in a converted living room in the San Francisco Bay Area.
Space has consistently been an issue, but in managing my hEDS, I found a nearby yoga studio that allowed me to do the activities I needed to do to manage my pain, including a class combining myofascial release and yoga.
When COVID-19 began to surge around the country, my yoga studio quickly shuttered — just as it should have.
The only problem? I didn’t have a safe space to continue the physical therapy I needed to keep my body in working order.
As a result, my health took a nosedive.
Even as I write this, my entire chest aches as though I was part of an unfortunate kickboxing accident. My kyphosis has gradually worsened, a literal (and constant) pain in my neck and upper back.
The other day, I fell checking the mail because my knees literally gave out from underneath me.
For those of us who are able-bodied, it’s easy to forget that the worst outcome for a shelter-in-place order isn’t just “I can’t go to my favorite coffee shop” or “I’m bored out of my mind.”
For those of us with chronic conditions, it means many of us are unable to access the activities, therapies, and resources that helped us manage our daily lives.
And if you’re immunocompromised, it can mean total isolation — even and especially as some states begin to reopen.
In my tiny city apartment with three humans and two cats, I was faced with a difficult (and expensive) decision.
I couldn’t continue my PT at home because there was simply no space to do so. Knowing I could be asymptomatic, and living in a college town — with hoards of drunken, mask-less, irresponsible students — made going outside a risk I wasn’t willing to take, either.
The idea of living at this increased level of pain until (and if) a vaccine becomes available wasn’t something I felt I could endure. And the idea of going outside daily to move — while potentially exposing myself or others to this virus — didn’t feel like the right decision, either.
So our family made a choice we’re fortunate to be able to make. We’re moving to another state for the sake of our health — and our neighbors’ too.
Moving to a bigger space — which includes outdoor space — was the only way to continue to self-quarantine in a sustainable way.
But there are countless people with chronic conditions who can’t afford such an expensive accommodation.
There are some who require hydrotherapy and can’t get to a swimming pool, others who are immunocompromised and can’t go outside but need daily walks to prevent deconditioning.
There are people who need physical therapy but can’t safely access in-person instruction, and others who need critical medical tests, injections, and infusions but have had to put these on hold for the foreseeable future.
My family isn’t the only family making difficult decisions because of the health impacts of sheltering in place.
We’re just fortunate enough to be able to make the decisions that we need to, even if it means scraping by and putting moving expenses on a credit card to be able to make it happen.
I don’t share my struggles because I believe swimming pools and yoga studios should be reopening for disabled people.
Quite the opposite — recent surges in COVID-19 cases have indicated that now is not the time for taking risks.
I share this because there’s still a widespread refusal to comply with CDC guidelines.
I share this because there’s still profound denial around the seriousness of this pandemic, and the importance of wearing a mask to help mitigate spread.
Because while some people are up in arms about not being able to get a haircut or go drink at a bar, families like mine are left making life-altering decisions because of the spread of COVID-19 — worsened considerably by the recklessness of our neighbors and politicians.
When you see a shelter-in-place order or mask recommendation as an issue of personal freedom rather than collective responsibility, you miss the point entirely.
We stay home not because it’s comfortable, but because the discomfort of quarantine is worth it even if just one vulnerable person is protected as a result.
We shelter-in-place because there are too many unknowns about this virus to be sure we aren’t exposing our neighbors.
We wear masks because the best evidence we have indicates that certain masks can thwart many of the respiratory droplets that spread the virus from person to person.
For families like mine, we’re not questioning whether we should reopen our state. Instead, we’re left reevaluating how sustainable our living arrangements are in the long term.
The statewide shutdowns aren’t the problem, though it’s easy to point fingers. Believe me, I’d love to go to a movie theater with my partner or get back into physical therapy for my pain.
I am radically accepting this new reality, though, because it’s the only way I know how to protect myself and others.
Closing beaches and hair salons isn’t the issue. Being asked to wear a mask isn’t the issue, either.
It’s our refusal to let our lives be momentarily disrupted in order to protect one another that’s the real problem.
And if our neighbors and nation’s leaders refuse to treat this with the seriousness it warrants, then it’s up to us to do whatever we need to do to continue sheltering in place — even if it means finding a new home altogether.
I’m in this for the long haul. Literally.
The stark reality we face is this: COVID-19 isn’t going anywhere.
And until it’s better contained, we should be prepared for the future we’re facing — not longing for the lives we had before it became our new reality.
Sam Dylan Finch is a wellness coach, writer, and media strategist in the San Francisco Bay Area. He’s the lead editor of mental health and chronic conditions at Healthline, and co-founder of Queer Resilience Collective, a wellness coaching cooperative for LGBTQ+ people. You can say hello on Instagram, Twitter, Facebook, or learn more at SamDylanFinch.com.