A pair of feet with a differently colored ball and chain around each ankle.

Getting Another Diagnosis with HS

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.

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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HSDisease.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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