I am writing this essay about Spondyloarthritis Awareness Month 2022 while recovering from a surgery I delayed over a year due to COVID-19. My four cats and I are sheltering at home as we have done since March 2020, except for necessary medical appointments. Birds are chirping outside my open window in sunny California. For brief moments, it almost feels like nothing is wrong in the world.
Yet, as the pandemic continues in its 3rd year, I ache with the fatigue I know so well. The fatigue comes from spondyloarthritis inflammation, not knowing when relief will come, and others not understanding what I’m going through – which is part of that extraordinary fatigue that comes from a lack of spondyloarthritis awareness. Then, the novel fatigue that comes from living through a pandemic with no end in sight.
These diseases — both SARS-CoV-2 and spondyloarthritis — seem to have a knack for dominating our lives. Yet, in our current environment, where so many things seem beyond our control, Spondyloarthritis Awareness Month is a shared call to action that unites us and reminds us we are part of a global community. It’s our month to bring fatigue along for the ride while we care for ourselves, tell our stories and expand public knowledge of this disease, which is all the more important to do during and after the pandemic.
As a result of COVID-19, a new cohort of people will join the chronic disease community. As more people are diagnosed with Long COVID, many may discover they also have a form of SpA. Others may be referred to rheumatologists and dermatologists for other Long COVID symptoms. This will impact our access to care and treatment, even as we already face too few rheumatologists to fill the current need.
I struggle not to worry about this, yet our community is enormous. We know that at least 3.2 million people in the USA live with a form of spondyloarthritis, which is more than rheumatoid arthritis, multiple sclerosis, and amyotrophic lateral sclerosis combined. We have a lot of power, and this is the month to use it to advocate for more treatment options, funding for research, access to care, and take care of ourselves: our whole selves, including our mental health.
When I began telling my story about living with SpA in 2013, I didn’t create room to care for my mental health. I didn’t know I needed to. For those of us — and I expect there are many — who feel this disease (whether we’re talking about SARS-CoV-2 or spondyloarthritis) has taken away so much, whether it’s current joys to the futures we never imagined we’d lose, it’s vital to do more than treat or prevent clinical damage. It’s crucial to find ways to retain our identities, reclaim who we are/were, discover our passions, maintain them within our own personal limits, and focus on ourselves. As someone who manages depression, anxiety, and PTSD alongside my axSpA, I know that when my mental illnesses flare, so does my axSpA and vice versa.
Mental health care is as essential to managing chronic disease as treatments that control inflammation and pain.
SAA curates content for the spondyloarthritis community. Their resources empower us to learn how to manage our disease and understand the impact of the illness upon our bodies. This includes the physical implications of SpA as well as the biopsychosocial impact of the disease because, as we all know (even if we might not have the words for it yet): SpA is a systemic disease not only clinically but also in how it systemically affects how we live, understand our lives, and move through the world.
For the longest time, and especially when I was applying for federal disability benefits, I could only see myself as broken, as what I could no longer do, be or have. I saw my body as the problem. I felt I somehow hadn’t tried hard enough to continue working even though working was harming me. I told people, “I am not my disease!” as if somehow separating it from my life would make me less broken.
I later learned that the shame and the blame I placed on my body is internalized ableism and that the world encourages those thoughts. Even so, it took losing almost all of how I used to identify for me to break fully, and then, as cliché and as ‘Rumi’ (“The wound is the place where the light enters you.”) as it sounds, to let the light back in and realize that I had not lost myself. It took breaking – reaching rock bottom, depression & grief & hopelessness from what spondyloarthritis had taken from me – to realize that the poetry I used to write as a kid could become the essays I write now. Nurturing my writing could never replace the athlete I was, but it could provide the same kind of release.
Eventually, I agreed to try other adaptations to improve my life, like using a shower chair to preserve energy for cooking or a wheelchair to reduce pain while gardening. Those tools renewed my life, and I stopped feeling such shame and stigma around identifying as disabled. My whole health improved because my mental health improved. I realized that I did not have to be nondisabled to be a valid human. I learned that I am a whole person and a disabled person. I began calling it broken and whole at the same time.
I’m now proudly disabled. It is my central identity aside from being a nonbinary trans person, gardener, and cat theydy (rhymes with “lady”). My best friends are all disabled, and we share a culture and an understanding of what it means to be in a body/mind that society does not see as valid.
What got me to where I am today, to feel whole again, is a continuation of what started on day one of diagnosis – telling my story, learning my account and allowing it to break me, unapologetically sharing it, and not hiding it or masking it.
I used to say I would never accept my spondyloarthritis. But I do now. So, as part of my awareness month, I will be reminding people that SpA is a part of me that is never going away. It has changed things about my life and body that I’ll never like. However, keeping it completely separate from my life causes more harm than good. Now I say, “This is who I am with spondyloarthritis,” instead of, “I am not my disease,” because I refuse to live my life seeing myself as unwhole unless I remove this parasite-of-disease from my body.
I would love a cure. But I will not wait for treatment before living my life as a whole person.
I share my story with you in this essay as an example of how one person navigated grief and loss to eventual community and wholeness. We’re all on our timeline of grieving our diagnosis and even new symptoms, processing who we were and who we thought we would be and missing what we have lost. No one can prescribe a timeline for your processing and grief or how to go about processing and grieving. You may never be done processing or grieving, and I’m not.
I encourage you to think about your Spondyloarthritis Awareness Month 2022. What does awareness look like to you, and what does caring for your whole self look like? SAA has the information you can link to when you share your story if you do so online – via webinars, advocacy initiatives, support groups, essays by rheumatologists, research findings, and more. This month is about our community, but even more importantly, it’s about your life and whole health living with spondyloarthritis.