Coming To Terms With HS
Last updated: April 2023
For a long time, I thought that I would never come to terms with having HS. And even now, on some of the harder flare days, I wonder if I ever truly will come to terms with it. But I guess that isn’t really the main goal anymore.
Acceptance is a spectrum
In the years since my diagnosis, I have come to view “coming to terms with it” as more of a spectrum instead of a final destination at which every person who is diagnosed with HS or any other chronic illness is supposed to arrive at. Much like with other emotions like happiness, it’s not necessarily realistic to expect yourself to constantly feel positively about something that can cause pain and hinder some life plans. For me, working towards the more positive end of the “coming to terms with it” spectrum has come with managing expectations and having more grace for both myself and my body.
When I was first diagnosed, two weeks before I started college, I was not prepared for the impact that HS would have on my academic performance. At first, the flares would make it painful for me to move my arms and work on homework assignments and essays. The medications that I was taking led to a variety of side effects ranging from nausea to dizziness. This made it extremely difficult to focus in class and on exams. I also spent much of my time in between classes calling doctors to set up appointments or arranging flights back home to see my specialist.
I felt like I was missing out
As I became consumed with all of the parts of the college experience that I felt I was missing, I thought about the time I missed hanging with friends or the tests that I could have performed better on. I was more interested in looking at the ways my body was failing me by having HS, instead of looking at all of the good things that my body was doing for me on a daily basis.
After graduating college, these feelings latched on to other things. On days when I had flares, I wasn’t as productive as I wanted to be at work, or I would cancel plans with friends to sit at home with heating pads on the lumps, hoping they would burst, ceasing the pain shooting down my arm.
I had a different choice
Over time though, through speaking to others with chronic illnesses and reading books on disability justice, I began to see that I had a choice in all of this.
I could choose to focus solely on the negatives of HS, or I could start trying to reframe my thinking by seeing everything in a different way. My body helps me do amazing things – it got me through a rigorous college, it gets me to work every day, and it allows me to write articles like these. Having HS has forced me to slow down a bit and enjoy the smaller things (which I and so many others would benefit from).
HS has made me more empathic
HS has also made me a more empathic person because, just like how others don’t know if I’m snappy when I’m having a flare up and I’m in pain, I don’t know what others are going through. I have also become more educated on the issues that disabled and chronically ill people face in society and have made it something that I want to work towards fixing.
That’s not to say there aren’t bad moments or bad days anymore. Some days are extremely painful and all of my gratitude goes out the window. But those feelings do not last as long anymore because I know that the pain will eventually subside, and my body will still be there, ready to take me on to facing another challenge and working towards my goals.
When you need to vent about HS, who do you turn to first?