What someone with spondyloarthritis wants healthy people to know about living with SpA during a pandemic:
It’s the same as always. We don’t have a lot of answers, and we are also pretty scared.
“I think I have this disease.”
“How do I get the test?”
“How do I treat it?”
“My test came back negative; why do I still feel so bad?”
“How did I get this?”
“I just lost my job.”
“My family doesn’t believe me.”
“Do I need to wear a mask when I shop for groceries?”
“Have any of you had X symptom?”
“Can I pass it to my children?”
“Can I die from this?” “I’m scared.”
I’m used to seeing these phrases multiple times a day. But I didn’t just start seeing them. I have seen these posts for years in private online chronic disease groups. We’re all we have. We’re all we always will have because we have no other choice.
This pandemic is a time unlike any other, yet so much of it feels eerily familiar as someone living with spondyloarthritis.
In a way, COVID-19 oddly seems to parallel my “normal;” so much so that I recently compared my body to a pandemic to friends – it can quickly get out of control. While COVID-19 has more unknowns than knowns at this point, what we do know reminds many in the rheumatology and spondylitis community of what we already know well: cytokine storms, heart involvement, lung involvement, debilitating joint pain, skin symptoms, and more. We don’t yet know the long-term impacts or prognosis of COVID-19, but we do know that we should take this disease seriously, just like living with spondyloarthritis.
Mind you, I am not suggesting COVID-19 and SpA are the same. They definitely aren’t, but I do believe the spondy community is well-equipped to understand the potential severity of COVID-19 because of so many similarities to its systemic nature.
I have read countless stories from those who have survived minor cases of COVID-19, and each time I am stunned by the similarities to my day-to-day symptoms. I shouldn’t say this, but this simultaneously gives me hope and also worry for the future:
I hope for improved treatments, research, and awareness for the spondyloarthritis community because of the research into the novel coronavirus in ways that intersect with rheumatology. I have already seen how immune-modifying medications have been tried in the treatment to help people recover from COVID-19. I am also heartened by a newly formed Rheumatology Alliance worldwide that is collecting data from the whole community of rheumatic diseases about how COVID-19 and rheum diseases interact.
I fear the future of healthcare for the rheumatology community, and I hope we can all join in efforts to support an increase in rheumatologists once we are through this pandemic. In 2019, it was estimated that we would need 100% more rheumatologists by 2030 to account for the growth in rheumatologic diagnoses and expected retirements in the field. I feel certain the number of rheumatologic diagnoses will increase even more than expected post-COVID due to the disease triggering inflammatory conditions. I also fear a wave of earlier-than-expected retirements from an already strained rheumatologist practitioner cohort. It should be noted that I am just making an educated guess about this, and that I am not a licensed medical professional.
When I was diagnosed with axial spondyloarthritis in 2013, I had no idea what was in store for me long-term; all I knew was that I should take the diagnosis seriously. There was a lot I didn’t know about my disease, and it was difficult to find reliable information about it online and from doctors.
So much about COVID-19 feels familiar to my spondy brain. I am terrified by these symptoms that I am used to reading about associated with spondyloarthritis, but I also feel in control that I know what we’re up against. I know that the SpA community is being extremely careful, and perhaps that is why we don’t seem to have been impacted in large numbers by COVID-19. For that, I am grateful.
I want healthy people to know that living with spondyloarthritis has taught me – and the whole community – to take health threats seriously and focus on reality: the pandemic is here in full force. This is not a drill. We’re in the eye of the storm with more brewing off the coast.
Essays and tweets have circled the chronic disease sphere lauding how we are good at this survival during a pandemic because not much has changed for us in how we must always look out for ourselves because of many of our statuses of being high risk for any infection.
For years I’ve said, “Even a simple cold could land me in the hospital with pneumonia.”
Now, many otherwise healthy people are literally living my worst nightmare I’ve shared so often.
When my friends and I started the #HighRiskCovid19 hashtag in March, it began trending almost immediately. For hours we refreshed our Twitter feeds, reading about others experiencing fear from COVID-19 and speaking to the importance of public responsibility to protect us.
We’re accustomed to adjusting ourselves to fit the outside world – when it’s flu season, we are extra careful. When a pandemic comes, we worry about what additional things we need to do to protect ourselves.
Because of spondyloarthritis, I have on hand many of the things the world now considers necessary: rubbing alcohol, hand sanitizer, masks, and gloves.
I have limited energy every day. And every day is different. The added tasks of sanitizing everything that comes into my home has replaced the energy I used to use on sweeping my floors and washing my dishes. There is always a loss when something is added, by necessity. I can either choose to sanitize my groceries and my mail, my shoes and my doorknobs; or I can instead clean my dishes like I used to and take the risk with my groceries and mail. I am forever exhausted, choosing between this and that task to survive.
COVID-19 has put me in survival mode.
Living with SpA comes with a unique set of tools we develop that become useful on any pandemic-survival resume: self-advocacy, hyper awareness of our bodies, and a healthy fear of getting any sort of infection from a cut to a virus.
I have switched away from a treatment I get in an infusion center to a shot I give myself at home; and there’s no guarantee it will work. This was something my doctor and I previously discussed, so I did not make the decision without support.
I would say that now you (healthy people) know what it’s like to live with spondyloarthritis, but that’s impossible. Because after the pandemic ends you will stop asking these questions, saying these things — but we will continue. When the pandemic ends we will still be sick, as we always are and were before. But, now you can sample what it’s like to face a disease no one knows the answers to, with more questions and guesses than proven facts. Now you can sample what it means to turn to your community for help when you don’t know what to do. Now you can sample what it’s like to question every symptom, live in constant fear of your body, and worry about others going through exactly what you are. Now you can sample and see and absorb the life folks like me live every day, pandemic or not.
When this pandemic ends, please remember that those same questions, comments and reactions will live on behind the scenes as part of the continuation of normal life for much of us. For now, though, help support us by listening to our legitimate fears as well as our expertise in surviving the unknown.