Left in the Shadows

I live in Florida where there has been a colossal divide about reopening the beaches for residents and tourists. The one side wants to begin re-fueling our tourist economy, while the other side believes that a return to tourism may create a resurgence of COVID-19. This story has already unfolded in my sleepy, beach community, with the economy focused side winning out. No matter which side you support or a combination of both, there is another story unfolding. In every community across the country those of us with RA and others with compromised immune systems are being left behind.

Being an immunocompromised business owner means an impact on both sides

The mental debate for me was challenging, because I am deeply impacted by both sides. I co-own a beach business (yoga studio) that has been destroyed by the closing of our beaches and our state. While I can’t wait to walk in the sand and offer yoga on the beach again, I am abundantly aware that as an immunocompromised RA Warrior on Biologics, it is not safe for me to do so. This shift to reopening the very thing that I need for my business to survive, could be the very thing that could threaten my health. I am being encouraged to move forward and rebuild my business, yet it’s not safe for me to do so. I want to move forward because I want to engage in my community again and feel included, but it’s not safe for me to do so.

Being left behind and dealing with loneliness

As you can see, the decision to reopen our beaches and economy makes me, only one small part of the 1.5 million RA Warriors in the U.S., feel completely left behind and alone. Our predicament is not in the mainstream dialogue at all, it is as if we were left in the shadows. The debate over whether or not to reopen is not so clear cut for us.

Because I live in a small beachfront tourist town (it’s so cool), thousands of people flock here every year to play on our beaches and shop in our inviting, beachy stores. This is how my own small business has thrived for the past four years. I LOVE it so much. I absolutely love all of our various tourist seasons because being surrounded by folks that are having the time of their lives in my town is really cool. It creates the most wonderful and positive atmosphere that is palpable. You can feel it and experience it everywhere you go. Even a mundane trip to the grocery store means that I am surrounded by tan tourists smelling of coconut and sunshine.

Mixed feelings about lifting the stay-at-home order

Now that our stay at home order has been lifted, our town and beaches will soon be saturated with visitors from all over the world. This makes me feel both happy and afraid. I am happy because I am as anxious as anyone else is to get back to the beach life that we have built and enjoyed. I am also hoping that our yoga studio will eventually be able to resume offering yoga and rebuilding our business. I am afraid because an influx of tourists into our small beach community will mean that I am infinitely more vulnerable to becoming sick.

But when can I, as an RA patient, safely leave my house again?

I find myself wondering when I will ever be able to safely leave my house again. With so many people all over the country anxiously trying to get back to their “normal” lives, I feel like I am being left behind without the opportunity to do so myself. While so many of my friends and family members are preparing to get back to their lives, whatever that may look like for now, I will have to stay here, in my apartment and watch from my window. I feel like I am in a fish bowl in reverse. I can see the Gulf of Mexico from my living room, yet it has become too dangerous for me to go and enjoy it. My fear is that the risk will continue to grow as the tourists that I love so much begin to return in earnest to our cool beach town.

Feeling left out

It feels like everyone here is leaping out of their homes, heading to the beaches and resuming their pre-quarantine lives. This may be an inflated perception born from scrolling social media and news headlines, but it is still leaving me with lots of feels. It makes me feel left out because leaving the house and joining the throngs of beach goers or grocery shoppers is not a safe option for me and it may not be for you either. This has left me feeling sad and left out of my own community that I love so much. Those feelings are very real and may be for you too. So, I want you to understand that there are thousands of us all over the country that are feeling the very same way. Let’s shed light on the shadows together, RA Warriors and Autoimmune Warriors making meals, bingeing Netflix, staying on top of their meds and staying sane together.

How I've been coping throughout all of this

I have been trying all kinds of things to rebuild and encourage connection in my day to day life. While others around me may be moving forward in the ways that make them happy, I want to do the same in ways that will make me happy and allow me to stay safe. Honestly, I’m not even sure what that is yet, so I keep trying things that are new to me to see if anything feels right. I strive to keep an open mind as to what may or may not help me feel included, happy and whole. I’ll keep trying and I want you to try as well.

Here are three things that have worked for me. They seem simple and that’s how I like it:

Attend a LIVE Zoom workshop on anything at all

I signed up for an inexpensive ($20) and short (90min) writers’ workshop and enjoyed it in my jammies with my chihuahua. I kept my video off but participated in the live chat with questions. It made me feel included and like I had forward momentum.

Start a physical routine

Anything at all that feels good in your body. Find it and do it again and again. I take a short jog or walk through my neighborhood every day. This is a totally new habit for me. I love waving at my neighbors as I slowly jog or walk by. I look forward to it now.

Connect with others virtually

Reach out to someone, or many people, everyday via phone call, email or text. I have really found connection by calling people I don’t usually call, texting people I don’t normally text and making connections with people in my life in ways other than Facebook or Instagram. This has been surprisingly easy and instantly fulfilling.
Give one or all three a try and see if anything feels right. What have you tried that has worked for you? Let us know so we can try it too.

Knowing that our struggle is shared will not take it away, but allow it to lessen the feelings of being left behind and alone. If you are immunocompromised and are afraid to leave your house, you are not alone. If you have RA or any underlying condition that demands that you put your health first above your emotional needs, you are not alone. You are there and I am here, but I am on your side and you are not alone.