Chronic Illness In Your Twenties

As a 20-something woman, my life is expected to look a certain way. There is a certain Sex-and-the-City-esque romanticization of being in your 20’s. People think you go out partying all night, date random people, and otherwise have a carefree existence. That may describe many people, but definitely not the case for me. Hidradenitis Suppurativa (HS) hit me in my teenage years, and other chronic illnesses hit me harder in my 20’s.

What I find is that people assume a lot of things because of my age. They assume I am immature, have perfect health, and unlimited energy (among other things). If you’re in your 20’s, you are still considered a child in many ways and have no idea how difficult life is. Many of my coworkers often comment about their ailments. They frequently lecture me about “how it all gets worse as you get older.” Although that can be true, they don’t know how much pain and fatigue I experience everyday.

I couldn't afford to make mistakes

Your 20s are supposed to be the time you make mistakes and try to “figure it all out.” With a chronic illness, you can’t really afford to make many mistakes. While younger people may put themselves in debt trying to figure out life, I was racking up medical debt. Someone without a chronic illness can take any job after college for the experience. I had to take the job with the best medical insurance to cover my expensive treatments.

Additionally, the stigma attached to the resulting mental health challenges and even some medications are worse. People will ask me “what do you have to be depressed/anxious about?” Because I take many medications, people will give me so much unsolicited advice it makes my head spin.

Living with hidradenitis suppurativa is exhausting

I applied for FMLA in 2022 and it has helped tremendously. The flares I have are hidden by clothing, the chronic fatigue is invisible, and other symptoms are not immediately apparent when you look at me. Many of my coworkers question why I miss so much work. It’s exhausting to live like this already, but even worse when you can’t explain yourself. I choose not to be open with my illness because of my workplace culture. This makes it easier to be doubted and feel gaslighted.

The social and familial expectations are also overwhelming. I have friends and family who have a difficult time understanding my HS. They don’t understand the chronic fatigue I face and how some days my abscesses are so large I cannot move my arms or walk. They question when I will have children, which is something I question myself all the time.

Having empathy for one another

My 20’s are deeply influenced by how I am feeling day to day. I don't go out partying and don't have unlimited energy. By now, many people my age are getting married and having children. I’m not quite there, as I am still trying to figure out how to take care of myself. Dating and relationships are complicated by my HS scars, lack of energy, and the very real insecurities I have because of my other conditions.

I think society has a lot of expectations for people. However, the best thing we can all do is have empathy for one another and keep an open mind. One person’s path is not going to look like the next person’s. We are all different and experience life on a spectrum. For now, I am setting strict boundaries at work and in my personal life, living life on my terms, and not paying attention to societal expectations. Everyone is just trying to figure it out and do their best. Once we understand that, we can let go of what we think everyone “should” be doing.