A phonecall between a patient with axial spondyloarthritis and doctor with the image divided to show distance.

What Advocating for Yourself Can Look Like

At the beginning of December, I had adjusted my biologic in the hope to have some relief for the increasing AxSpA symptoms I was experiencing after a brief period of relief. The holidays were fast approaching and I hadn’t begun to feel any sort of relief and I was feeling really worried this holiday season was going to be another one I spent struggling in pain, and not present with my family.

So I emailed my doctor about the amount of pain I was feeling,and the possibility that maybe this medication wasn’t the one for me. However, with it being such a new dose, we decided it was best to wait it out to make sure. Although I agreed with this care plan, I began to think of all the past holidays that had been so unenjoyable because of my AxSpA pain, and started to feel really helpless and worried I wouldn't be able to give my kids the holiday I had wanted.

I decided that I wasn't comfortable with missing out on another holiday and I emailed my doctor again and asked very directly for a dose of steroids to get me through this season of pain. She felt that was a good option also. We spoke about the side effects and symptoms of long and short term use and then provided me with a prescription, and within the hour I had my first dose.

Steroid tapers are a common tool to get AxSpA patients through times of flare, and I had known this by researching and speaking with others in the AxSpA community, but initially the thought of asking for this made me feel very uncomfortable. I didn’t want to seem overbearing and I didn’t want to insult my doctor by asking for something she hadn’t suggested. I had thought maybe it wasn’t the right fit for me, maybe my doctor already considered and decided against it and that’s why she hadn’t offered it as an option. But simply put, my fears were not facts.

This medication helped me so much, and I had one of the best holidays I’ve had in a decade. This experience quickly taught me that feeling those brief moments of being uncomfortable or worried about insulting your doctor far outweigh suffering needlessly.

This is just an example of one way that we can advocate for ourselves, this particular route may not work for everyone, but I believe always asking “what else" can start a conversation that leads to getting the relief we deserve!

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