Finding Your Identity When You're Too Sick to Work


When meeting someone for the first time, one of the first questions people ask is “What do you do for a living?” They believe that your career will tell them something about who you are. They might even have an idea of how much money you earn. It’s no secret that society is impressed by big careers and lots of money or that these people are seen as valuable and successful.

There’s another reason people ask about your career, though — they believe it will help them get to know you on a personal level. Artists are said to be free spirits, doctors are stern and straight-laced, models are fashionable and a bit materialistic, and librarians are meek people who always have their noses in their books.

What does this mean for those of us who are too sick to work?

Does it mean we don’t have an identity? It often feels that way. When people ask what I do for a living, I tell them that I am chronically ill and unable to work, and then their tone changes. Sometimes the problem isn’t feeling a lack of identity — it can also be the opposite, as if they take the fact that I don’t work and use it to define me as a person.

Since every individual is different, people have different opinions about chronic illness and what it means for someone who can’t work. I have experienced many different reactions to my situation, and some of them have made the individual’s views pretty clear.

When I explain my illness and why it keeps me from being able to work, the most common experience is someone pausing as they look me up and down. They think to themselves — and sometimes even say — “But you look so healthy!” I try to explain to them that most of my illnesses are not visible from the outside.

They see a young woman in her 20s standing in front of them, wearing a pretty dress, and looking healthy. If they only knew the amount of tears I cried while getting dressed, the amount of sweat that trickled down my face as I did my makeup, and the sheer pain it’s causing for me to walk and talk, they would think differently.

Two photos of the writer - the one to the left of her in a sundress, the one to the right of her at the hospital, not feeling well.

They often look perplexed and ask, “Well, have you ever tried to work?” as if they are playing detective to find out if my reasons are valid. People think these rude and embarrassing questions give me the benefit of the doubt instead of jumping to the conclusion that I am too lazy to work. But the fact that they grill me with questions shows me how quickly they decide that I fit that exact description.

I also run into people who think degrees mean everything. Maybe I went to school with their child, and as quickly as I can say “hi,” they are boasting about the newest degree their child is working on. When it’s my turn to speak, I bravely say, “My accomplishments can not be measured in degrees.” They do a quick, high-pitched chuckle, like you would when a child says something equally cute and naive. I don’t need to be a medium to know exactly what they are thinking — that they were right when they said I wasn’t college material. They are thinking about all those days of school I missed and that it was not because I was sick — it was because school was too hard for me. It’s almost as if making me feel dumb has a euphoric effect on them.

I’ve also had the unpleasant experience of talking with other young adults who think I don’t work because I spend all my time partying and having fun. They say things like, “It must be so nice to be able to sleep in when you have a hangover.” I try to tell them that I can’t drink on my medications, and I rarely feel up to going out, but it goes in one ear and out the other. They think it’s a blast to sit around watching Netflix all day. Oh, and sleeping! Everyone loves to tell me how lucky I am that I am able to sleep as much as I do. No, I’m not lucky! I’m unlucky to have been given a body that does not create the amount of energy a human body needs to survive.

I used to obsess over the fact that I didn’t have a career title. It infuriated me to my core. Every time I watched a show featuring a woman’s work life, I would think to myself, “This is what I should be doing,” or, “I’m smart enough to do that.” When I felt really down, I would start to believe all the judgmental things people thought about me. Maybe I was too lazy. Maybe I’m really not smart enough to pursue my dreams. I even considered the notion that my illness might be a punishment for something I did.

Eventually, I started thinking about people’s dreams. I realized that a lot of people had dreams that weren’t careers, dreams that don’t bring in a salary.

I started to think about what makes a good life. I realized when dying people look back on their lives, their best memories aren’t about working. They think about spending time with their families, traveling, taking risks, forming deep relationships, helping others, raising children, and making a difference. A lot of people regret putting their career before their relationships. I’ve even heard about people on their death beds who confess that they never gave their children the time they deserved. They never went to school functions, ate dinner with their families, had movie nights, or bonded with their children. Some never rekindled their relationships with their children, and they spent their last moments on earth alone.

I finally saw how blessed I was to have the often-overlooked joys in life. I would much rather have loving relationships than a glamorous career. These amazing gifts are the difference between being alive and having a life. I have a fantastic, supportive mother who is also my friend. I have an incredible sister, and I’m lucky to live very close to her and her little family. I couldn’t ask for a better best friend, and she is so understanding of my illnesses. I have been blessed with an incredible service dog who keeps me healthy and happy. I have a long bucket list, and some of those dreams have already come true, like traveling to beautiful islands. I’m grateful that my family is committed to helping me check off more of the items on my list, slowly but surely.

As far as what defines me, there are so many things that make me who I am. I am a Christian, a mom to my fur baby Savannah Rose, an aunt to the most amazing nephew ever, and an advocate for the chronically ill and disability communities. I love my family and friends, sweets, swimming, hot baths, and fashion. I am good at writing, having conversations, giving advice, training dogs, and styling outfits complete with jewelry and accessories. I could go on and on listing all these tiny things that add up to make me a unique individual. I know that everyone else can, too! A career in itself will never be enough to define me — or anyone else. We are all so much more than that!

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