Stress Impacts My AS The Most
When I was diagnosed with ankylosing spondylitis a few years ago, I'd been experiencing symptoms for nearly a decade. They gradually worsened over time, starting with uveitis, in the beginning, eventually leading to mysterious and endless fatigue, and then back, hip pain and overall joint pain. When I finally dragged myself in to see a rheumatologist and get a confirmed diagnosis (I'd sensed I'd had AS for years, as it runs in the family and I was HLA-B27 positive, but doctors had no radiographic proof), the symptoms were through the roof.
My commute made me so stressed
At the time of diagnosis, I was trudging back and forth between New York (where I live) and New Jersey (where I worked). Each day I endured a long 3+hour commute by crammed bus, and then the subway, meaning I'd be sitting for hours. When I wasn't sitting on a crowded sardine-can of a bus, I was waiting for a bus or missing a bus — all of it leading to increased pain or stress. My body had already been sitting for eight or nine hours per day (and let's be honest, even a standing desk couldn't prevent the pain) and then for several more during my commute.
I'd also miss my bus fairly often, as New Jersey Transit isn't exactly, er, reliable — and my not-too-flexible workplace would apply the pressure. I needed to be on time. Every day. But between the pain, the increasing inflammation linked to my increased stress and cortisol levels, and the sheer fatigue from a demanding job and commute, I was falling apart.
The 9-5 grind isn't accessible
You can't hold it against your employer that they want you to be on time, of course, but most 9-5 jobs are usually 9-7 jobs, with very few days off, very few understanding managers, and very few HR departments that make work more accessible for folks who battle a disease. Combined with the fact that sometimes I felt great — as AS is famous for! — it felt like I was on a roller coaster. I couldn't keep up.
The stress was eating me alive, causing deep pain, exhaustion and brain fog that was profoundly worrying. I felt embarrassed and ashamed because I felt like a failure. Sadly, I'm sure these feelings are all-too-common in the chronic illness community.
I transitioned to freelance
But I was fortunate. I could transition into full-time freelance, as I'd had experience working from home for myself. I took a serious pay cut and lost my employer's health insurance (which posed its own threats) but I was now autonomous. I could get the sleep I desperately needed. I could get out of bed and deal with morning stiffness slowly. And I could create my own schedule — which allowed for time to see my doctors when needed and take a break for yoga or a swim class. And because I'm a hustler, I tend to also work on weekends to make up any lost time.
I hadn't realized just how much stress was eating me alive, literally kicking up my inflammation levels month over month. My job became the main source of my flare-ups. And even though my boss at the time probably did as much as she could to remain patient with me, I still felt unsupported and invisible.
But it left a lot of worry
Leaving my job obviously opened the floodgates of worry: Would I make enough money? Would I be able to get insurance eventually? I made a careful decision to go freelance, which meant collecting several anchor clients before my leave (this took months) and doing as much as I could to save up a bit of money (I had no parental support). I approached the shift strategically because I felt it would truly change my life.
It paid off. There is so much research pointing to the fact that cortisol — the stress hormone — can lead to inflammation. And even though there's no way to a) eliminate all of our stress, or b) change our jobs, commutes, or stressors at the drop of a hat. I realize I was privileged to find freelance work.
At least my body had what it needed
When I could give my body what it truly needed — time to flourish, space to breath and move, and the ability to take a 30-minute break here and there, I noticed the constant churning of unregulated, wild stress diminish. And because of that, my pain levels went from a fiery 11 to maybe a four.
In my transition, I also chopped off 15 hours of sitting on a crowded bus, my back and hips on fire, per week. That alone made all the difference, as we all know that sitting still is enemy #1 to patients with AS.
Flare-ups still happen
Obviously, I could be zen all day every day and still have flare-ups. That's just the nature of this weird and wonky disease. I may not always be freelance. I may go back to working at an office one day. I can't predict the future. However, I do know that getting a hold of my stress levels has had the most impact on my experience of this disease.
What helps you manage your stress (and pain) levels? Let me know in the comments below.
Do you use the word disability to describe your AS?