My diagnosis changed the trajectory of my life. While I am grateful to finally have an answer about all the symptoms I’ve been experiencing, it was heartbreaking to learn that Ankylosing Spondylitis and Fibromyalgia are chronic and incurable conditions, with the former also being progressive.
It took me a long time to come to terms with my diagnosis. I was diagnosed with Ankylosing Spondylitis and Fibromyalgia in October 2019, however, I didn’t realize the seriousness of my diseases until February of 2021. At this point, my conditions worsened and I tried several medications and treatments that didn’t help much. I was homebound and didn’t realize at first because the pandemic was happening around the same time. Everyone was at home, but my reason for being at home was because of the change in my abilities. This made me realize how much of my life revolves around my conditions and taking care of my health. Once I realized how serious my conditions were, including the ongoing medical and personal care required of me, a mental shift occurred.
I started seeking out more information about my illnesses, to better understand what I was going through, what my prognosis looked like, and how to better care for myself. I sought research and medical papers, but also looked at social media and found a lot of disability information informed by the lived experience of other people who also live with these conditions. Knowing more about my conditions and talking to other people about what it’s like to live with these conditions, helped me become more in tune with myself, physically and emotionally. I began to understand my body and its specific needs better, thus reducing flare up severity and mental distress. I also learned how emotions can affect these conditions and started focusing on addressing those needs as well. I started identifying as disabled and found it to be a very true and liberating label for my life with chronic health issues.
Understanding myself and my physical and emotional needs, along with engaging with the disability community online has helped me immensely; I’ve become more comfortable and confident in myself. Having to advocate for my access needs with healthcare professionals and loved ones has helped me become a better communicator, which is something I have struggled with my whole life. Reaching out and talking to others in the chronic illness and disability communities has pushed me to come out of my shell. I am still generally a shy and kind of awkward person, but I am more comfortable putting myself out there and taking chances. Ironically, staying home all the time has actually helped me become more confident, gain better social and communication skills, and grow as a person.
Once I realized the severity and long-term implications of my diseases, I unknowingly started a journey down a path of self-love and self-realization. I’ve realized I enjoy advocacy and making a difference.
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