How COVID-19 Affected My HS

COVID-19 has changed our world. I was ordered to work from home in 2020 and I had a huge fear of catching COVID-19. I knew it could jeopardize my health, or even my life. I was lucky enough to be part of the first wave of people able to get a vaccine due to my full-time job. However, this did little to ease my anxiety.

Coping with COVID-19 the best that I could

After over 2 years, COVID-19 made an appearance in my home. My roommates and I tested positive in May 2022. I had horrible symptoms: extreme body aches, high fever, headache, congestion, cough, sore throat, and exhaustion. This was worsened by the anxiety I had because I was afraid of COVID-19 taking my life. As I fought to keep my fever from soaring and treated the other symptoms, my HS was flaring in a way that I hadn’t felt in years and it complicated my care.

Before this event, my HS was being managed with minimal flares. I was adapting to an increase in my Inflectra (Remicade) infusions and managing my other chronic health conditions.

I can say I have never felt 100%. But overall, I was coping and thriving as best I could.

From thriving to surviving

During my illness, I went from thriving back to surviving. Because Inflectra can lower your immune system I did qualify for Paxlovid, which is designed to lower the risk of hospitalization. However this also meant I could not get my infusions or take my other medications, including spironolactone. This also led to more flares and pain while I dealt with the COVID-19 symptoms.

I was fortunate enough to recover without serious complications. I still have a lingering cough and congestion, as well as brain fog and exhaustion. But I am just grateful to be alive and able to return to work. Dealing with COVID was hard, but my HS has been unbearable.

My HS flares are back... and worse

Now, I am able to get my Inflectra infusions again. I hoped that this would alleviate my flares and get me back on track. I was wrong. My HS symptoms have increased and worsened with more flares than ever and abscesses the size of golf balls in sensitive areas. I have not felt this much pain in years.

Trying to get back to work with multiple flares is a miserable experience. At times, I am barely able to walk or move my arms. Dealing with these HS flares has worsened my mental health and other chronic health conditions. I am not sleeping as well due to the chronic pain. I have resorted to applying to FMLA for HS and my mental health. This is something I have never done before and it's causing more anxiety.

To cope, I reached out to my dermatologist to get injections and an emergency dose of clindamycin, scheduled more therapy appointments, and I am taking more time off work to rest and get my sleep back on track. My body has much more healing to do but I am trying to stay positive and take the time I need to get back on track.