Learning to Manage AxSpa is a Marathon

They say “Life is a marathon, not a sprint.”

The meaning is that we shouldn’t get hung up on the little events we experience. Life goes on for a long time, and, eventually, things will work out. I always try to remind myself of that, and I think about all the “major crises” I have experienced, and how they were 4 years ago, and I am still here doing fine.

For the spondylitis patient community, this is also a good thing to remember. For us, however, I would prefer to update the saying since our lives are less like a marathon and more like the Badwater Ultramarathon which is a 135 mile race through Death Valley and ending at the peak of Mt Whitney. (Just thinking of this race makes my back hurt!)

The long diagnosis

AxSpA and AS have historically had such a long diagnosis process. Doctors have not been properly trained to spot and understand our condition. For several years doctors thought AxSpA was a white man's disease. If you weren’t one, you couldn’t have AxSpA. And even if you fit perfectly into their image of a Spondylitis patient, if you didn’t have fusion, you couldn't have the condition.

I even, after living with spondylitis for 24 years, had a new rheumatologist try to tell me I didn’t have AS because I wasn’t fully fused and in a wheelchair (sigh).

Now, thanks to better education, everyone can (hopefully) get the diagnosis. But, it still takes a long time in some cases.

The best thing you can do is be an advocate for yourself. Don’t leave your appointment unsatisfied if you don’t think the doctor is taking you seriously. They work for you, not the other way around.

Waiting for treatment

I went years without treatment because I was working with the information given to me in 1994 that there was nothing they could do. It wasn’t until I started meeting other patients online that I learned there were things called “biologics.” And then I still went a few more years without treatment, but mostly because I’m stubborn.

When I finally decided it was time for treatment, I couldn't find a doctor who would see me. 13 Rheumatologists in my area and all 13 said they weren’t accepting new patients. Finally after a few hours, one of them called me back and said she would take me because I was “interesting” (3 doctors have called me “weird,” so “interesting” was a nice change)

So, that was a short wait, but treatment took a lot longer. She wanted to see how I would do on NSAIDs alone, and then add a DMARD. Guess what? That was not enough!

So, she prescribed me a biologic.

Time for treatment, right? Wrong! Because Insurance needed to debate the need for the drug for a month and a half. They actually suggested acupuncture and chemotherapy before they would approve a Biologic. But, finally, I was approved.

I think about that month and a half just waiting and thinking it would never happen.. That was like 6 years ago. And I prevailed. Well...almost.

When will it work?

Or, will it work at all? I am asked this question so much in my support groups.

“How long does it take xyz to work?” The true answer is “I have no idea”, because everyone is different.

I would love to say that every AxSpA patient taking xyz will see results in 2 weeks. But, that is not the case. Some feel results quickly, but some almost see no results.

All you can really do is try, try, and try again. My advice is to give it a few months, and if it doesn’t work, talk to your rheumatologist and try something else. Yes, it is not a sprint, but a marathon to find a treatment that works.

However, once you finally feel relief, the time will have been worth it.

Life is a marathon

Living with AxSpa/AS is a lifetime ultramarathon with plenty of turns, elevations, and frequent breaks.

But, it also has moments where you find your second wind and the journey feels painless and easy. Those might be few and far between, but when you wake up and you don’t creak and crack too much, and you have the energy to actually do stuff, enjoy it!

As Sir Winston Churchill said: “If you’re going through Hell, keep on going.” This moment might feel like forever, but someday you will look back and see it was just a moment in your long history.