A woman with axial spondyloarthritis hunched over grasping her back, shown three times in a row.

What I've Learned Since Being Diagnosed Three Years Ago

August 30 will be my third diagnosis anniversary! Of course, I’ve been experiencing disease symptoms for about a decade before that (haven't we all?). When I went in for an official "I think I have AS" discussion with a rheumatologist in 2017, I already knew that I was HLA-B27 positive, and I knew that my dad had AS. I had horrible fatigue, several bouts of uveitis, and back pain (it's gotten worse). In my heart, I knew that I had to see someone to get confirmation of the disease.

Here’s everything I learned along the way

Advocate for yourself.

When I went into the doctor's office, I did not really understand how to advocate for myself at that point. I didn’t ask the right amount of questions, I didn’t demand the doctor explain things to me. And I walked out of the office more confused than clarified after receiving my diagnosis.

Get a second opinion, if possible.

I think it’s always wise to get a second opinion, especially when you are talking about something so major and so life-consuming as a degenerative incurable disease. The rheumatologist that I had seen initially (and who gave me a diagnosis of AS) had very poor bedside manners and was quick to write me off. In my heart, and my deepest intuition, I knew he wasn’t the doctor for me.

I was lucky enough to be living in a big city where I had options (and at the time I had great insurance). So I sought out a second opinion and found a rheumatologist who also diagnosed me with AS but he seemed more receptive to my concerns and who generally had a better bedside manner.

Invest in your holistic health.

For me the holistic is SO important. Doctors often treat the problem but they don’t take time to get to know the patients or look at the contributing factors behind disease progression. While I will always be medicine first, and I will never turn my nose up at traditional Western medication, I think it’s important that we take accountability in our health as well.

For me, that has meant looking into supplements, dietary regimens, exercise routines, and stress reduction techniques. I know for a fact that what we eat, how we live our lives, and how much we move has a direct correlation disease progression. Sometimes, in addition to medication, what we do, and how we approach our bodies can make that much of a difference.

For me, herbal supplements (like CBD), daily movement, and stress reduction techniques have been the most profoundly beneficial things in my experience of this disease.

Learn that grief is normal.

After being diagnosed with AS, I fell into a spiral of deep and profound grief. I felt as though I were somehow marked or made different, as though my life had been altered for the worse. The thing is, the diagnosis didn’t really change anything. My body already had the disease.  The diagnosis is just the kickstart to the acceptance process.

I had to lean in and accept what I could not change and change the things that I could. I still embrace the serenity prayer from time to time when disease acceptance becomes hard for me. This is because the grief cycle is nonlinear, and you can reach acceptance and then fall back into denial or anger at any point. It’s about having the wherewithal to recognize and recalibrate.

Say no.

One of the lame things about having a degenerative disease is dealing with the fatigue that comes with it. Oh my god, I AM TIRED.

Before I was officially diagnosed, I had such a problem with exhaustion. My friends thought I was flaky, and it became such a problem within my friend group that people stopped inviting me to things. I didn’t really understand that I couldn’t predict what my body would do day today, so I was canceling plans and being way too ambitious.

When I learned that exhaustion was normal for my body, I started approaching people with transparency — and canceling plans when I needed to. Without guilt and without shame. I had to shift my mindset. Now I tell my circle of friends that things could change at any minute, and then I’ll do my best to be there. I also asked them to continue inviting me!

In the end, this whole disease asks us to be more intentional and aware. There are definitely some really bad days, but it forces us to grow.

What have you learned since your AxSpA diagnosis?
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