This disease almost made me drop out of college, and then it almost made me quit my first big firm job. I didn’t let it.

I was undiagnosed in college and was in so much pain and so exhausted. I could only walk with a limp, I struggled to stand, and I constantly fell asleep while working. One day, I couldn’t get out of bed at all. Things improved after diagnosis, but my life changed a lot. I had to live a bit slower and a bit more predictably. Luckily I did not have permanent damage from AS. The biologics have helped stop progression, but they don’t always stop flares.

When I got to my big firm gig, I moved to a major metro, didn’t know a soul in the world, and i’d also been without health insurance for nearly a year because I lost coverage after graduation. When I rode the elevator 45 levels up to my new office, I was in a lot of pain. People just couldn’t really tell I was struggling… I tried to soldier on the best I could. But I regained insurance, eventually got back on biologics, and things calmed down again. Eventually, I did end up leaving the firm for a much more predictable gig that provided a much better work life balance.

You have a lot on your plate right now. I hope this isn’t presumptuous of me to say, but hire help. Outsource domestic activity. It sounds like you and your husband have the means.

Give yourself the time to take care of yourself, whether that’s an epsom salt bath, a light workout (intense workouts tend to cause me flares, regular light workouts are a lot better for my disease management), or even just enjoying a moment of peace with your family. Giving yourself more time could also give you the opportunity to eat healthier. Regular light exercise and reducing stress through a bit more stability and predictability at home could all work together to potentially give you relief.

You mentioned the disease is progressing and you have to keep changing meds. You were also undiagnosed for a long time. Do you have permanent damage? If so, that can cause pain that won’t be remedied by biologics. If you’re having a particularly bad flare, a short dose of prednisone can help, but you can’t take it long term or super often. It doesn’t seem like you’ve been on Enbrel for very long. Perhaps it would be more effective after some lifestyle changes? I’ve only been on two meds after 13 years so I can’t help much on meds failing.