Learning from Experience

Late in 2020, full into the pandemic was when I finally got the courage to look up ankylosing spondylitis (AS) online. This was a diagnosis I’d had for almost a decade but whose name I could barely pronounce.

Getting the courage to look up my diagnosis

AS was scary, saddening, and mysterious. I was always skeptical of what I could find online that would haunt me for months, as possible consequences and uncontrolled symptoms.

But the pandemic coincided with my second post-partum, and that’s when the disease hit me the hardest. I was in a state of complete inflammation, and I had just learned that I also had severe osteoporosis.

Typing AS and finding this community was comforting. And it also gave me loads of information. In disability, I found myself in the role of the ill. I was taking an injection daily for the osteoporosis and was back to Humira for my awful back pain.

From needing care to being the caregiver

Today, almost four years later, things are completely different. I am still HLA-B27 positive. I am still taking my Humira injections every two weeks, and I absolutely cannot go off my gluten-free diet. There's no way I could ever consider having anything with sugar because my hands and feet would swell and the rheumatoid arthritis symptoms would be freakish. I have had a hip replacement, and remembering the post-surgery makes me shudder.

But none of this matters. Because today, I am in my third year as a caregiver for my super athletic (non-smoking) husband, who got his stage-four lung cancer diagnosis two years ago. During the past twenty years that we've been together, I've gone on and off severe crises.

An unexplainable diagnosis

I've been to numerous doctors, used a cane, and had issues walking. I resented his relentless health and willingness to exercise. I'd sit in front the TV and roll my eyes because he'd work out right there in front of me, rubbing in my face how healthy his body was (in fact, the only reason he did it in the living room was to avoid making noise and awakening the children).

And then it hit us, the absolute, scariest of all diagnosis: an unexplainable, stage four lung cancer.

What I learned from caring for my husband

He's been on chemo and immunotherapy for over two years and is thriving despite this awful disease and treatment. The toll this illness took on us and everything it comprises is worth an entire entry given the complexity and mind-blowing experience that is being told 'you have a tumor' by the physician. That's for another time.

But really, it took just one chemo session for me to rethink my fear of Humira and biologics overall. Everything I always feared in my disease seemed so minor and 'fixable' compared to an incurable and scary disease such as cancer.

Redefining my identity as an ill person

I'm not at all undermining our bizarre autoimmune disease or the excruciating pain and lifelong consequences (including mobility restrictions) that AS can cause, but as a caregiver, I have been thrown on a journey where I shifted my attention completely from my own health to his.

This was so positive for me because I was so deep in my role as an ill person. Shifting my attention not only obliged me to care as best I could but also to learn and investigate alternatives for my spouse's treatment. This specifically made me almost forget my concerns about AS.

Thankfully, I am reacting well to my biologic and have kept up my exercise, so I'm basically pain-free, except for an occasional flaring in my hands and feet. I've learnt so much from this experience. I took everything so seriously regarding AS only four years ago, and today, I understand it is a condition that I have to accept, adapt to and ultimately, deal with less drama.