A woman sits cross legged with meditative hands on knees while workplace pandemonium happens behind her.

Struggling at Work

It’s 4am and my alarm clock goes off. It’s done this 3 days in a row now. I drag myself out of bed, pour a cup of coffee and drink it in the shower. There’s no time for my normal relaxing morning yoga and meditation because I have to get to work for the 8th day in a row. I arrive at 5:30am and resume my grueling tasks for the demanding project I’m working on.

My boss and the client encourage us on – there are only 6 more days in this process and then we’re done. Then we can have a break. When I hear this, I’m filled with dread. Six more days? These past 8 have already been more than I can handle, working 10-12 hours every single day doing demanding laboratory work. I come home and I collapse on my bed, tears in my eyes. I cry to my husband that I can’t do this anymore.

Pushing through with AxSpA is really hard

My job isn’t always like this. Most of the year I’m working a normal schedule, doing mildly physical work in the lab and the rest of the time at my desk. But 2-3 times a year, I have days like these – long days, very physical work, and tons of stress because huge sums of money and future contracts are on the line. They usually only last about a week and a half with a few days off after as a reward. For a “normal” person, this is likely no problem – push through a few hard days, have some days off, and come back refreshed. For me living with nr-AxSpA, this is a Herculean task, because a lot of my disease management comes from my lifestyle.

My disease management is like a house of cards

I manage my nr-AxSpA 5 ways – sleep, exercise, mindfulness, diet, and medication. My medication keeps my pain very well controlled, and the rest keeps my fatigue and stiffness under control. I think of it like a house of cards where everything has to be balanced just right – take one away and the whole house falls down.

When I have these times at work, I can’t do any of the things that keep my fatigue and stiffness under control. I can’t sleep because I’m too stressed out. There’s either no time for exercise and mindfulness or I’m just too tired. Thanks to my husband, my diet stays on course, but some days, I have to be in a clean room with no access to food, water, or restroom, for hours at a time, which throws off my normal hydration and eating schedule. At the end of the day, I feel completely drained and incredibly stressed, not just about work but that the intensity and lack of lifestyle management is going to cause a flare. I need much more rest than in the past to get back on track, so back-to-back days compound the fatigue and stiffness.

I question if I can stay

This latest period of intense work has made me question if I can stay at my job. Even though I only have these intense days a few times a year, the toll it takes on my body is too much. Being off of my routine even just one day has consequences. I don’t know what to do. Should I look for another job? Should I try to change my role within my company to something less intense? Should I request accommodations under the Americans with Disabilities Act? What will happen in the future if my pain isn’t well controlled, and I truly can’t do my job? I’m still trying to figure everything out, but I know whatever my plan is, I will put my health first.

Have you had to change jobs or ask for accommodation while living with AxSpA?

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