The Mental Labor of Chronic Illness
When I was 17 years old, I got my HS diagnosis after 4 years of painful, recurring abscesses. Little did I know this would be the beginning of a lifelong health journey. I never expected to be living with HS, depression, anxiety, ADHD, and now, possibly PCOS and sleep apnea. One of the most tiring aspects of having a chronic illness (or multiple) is the mental labor it takes to manage my care. Mental labor refers to the invisible mental work we do every day to manage our lives. Those of us with HS and other diseases do this work every day without realizing it. Some examples include:
- Managing your medications
- Planning your days around multiple doctors' appointments
- The anxiety of staying home sick from work
- and the emotional toll of having our pain minimized or dismissed
The mental labor of HS can be overwhelming
Although HS primarily affects me physically, the mental labor of managing my care can be overwhelming. As I write this, I am on my lunch break at work, on hold with my insurance company, and trying to budget my finances to afford a medical procedure I need. And in the back of my mind, I am thinking about scheduling time off work for the procedure, when I can pick up my prescriptions, and trying to remember to drink enough water today so I can get labs done tomorrow. My brain is constantly going 100 MPH tracking and remembering every minute detail of what my mind and body need.
This mental labor is not limited to our daily care management. Spreading awareness of HS means telling your story and being open about your disease. There are days I simply do not have the mental capacity to take on that role. I occasionally get exasperated when I have to repeatedly explain my conditions, the side effects of my treatment, etc. to family and friends. Even dating comes with the anxiety and stress of telling someone new about my HS.
Hidradenitis suppurativa does not define me
Chronic illness has made me an advocate - for myself and others. This mental labor of having a chronic illness reminds me why it is important that we not be defined by our disease. We are people with full lives outside of HS. My mental health issues make the mental labor of doing simple tasks difficult, even if it benefits my physical health. HS warriors, and those with other chronic illnesses, are familiar with working through the overwhelm and physical pain we are in. What has helped me is using my calendar religiously, continuous therapy, and coping techniques for my mental health. We can’t step away from our disease, but we can certainly give ourselves a break when we are overwhelmed and reach out for help when we need it.
Where did you first hear about hidradenitis suppurativa?