Getting Another Diagnosis with HS
Last updated: January 2023
HS is a grueling disease that has taught me so much. I was diagnosed when I was 17 years old and will soon be 27. Coming up on the 10 year anniversary of my diagnosis, I was recently diagnosed with another chronic illness: sleep apnea. With this new diagnosis, I am triggered. I feel the same grief and loss as when I was diagnosed with HS.
Working hard to accept my hidradenitis suppurativa diagnosis
At 17, I did not truly understand the lifelong impact HS would have. This was partly due to my age, but also because I was lucky enough to have a great dermatologist who gave me hope. As time has gone on, I have gone through the stages of grief many times over: denial, anger, bargaining, depression, and acceptance. I have worked hard, through therapy and self-reflection, to accept my diagnosis. But learning I have sleep apnea (and possibly PCOS) has triggered the same emotions as before.
I find myself reluctant to follow the prescribed treatment. I am angry at my body for having yet another issue to manage. I have been in the denial stage for quite a while, even while adjusting to a CPAP machine I hate to use. The stress of a new diagnosis has led to more HS flares as well. Stress is a huge trigger for me, which then in turn affects my sleep and HS.
Taking a step back
In the meantime, I have been adjusting to Inflectra for my HS. Going through the monthly infusions that take hours to administer has taken a toll. I feel grateful to be able to access these infusions, but I also feel burdened by them. In my head, I know that having HS gives me a greater chance to have comorbidities, it does nothing to lessen the feelings of anxiety and depression I have about a new diagnosis.
The small silver lining is that HS has taught me how to advocate for myself in the medical system. It has taken me on quite a journey, but I am learning the journey does not stop with that diagnosis. I fight this battle every day and although it blatantly sucks, I am learning more about myself. My HS journey has prepared me for whatever else is in store, and a new diagnosis is a good reminder to step back and take care of myself.
When you need to vent about HS, who do you turn to first?