fb

Working with a chronic illness is a bit like pretending to be a swan while paddling furiously beneath (“indicates maintaining a calm and composed exterior while working behind the scenes”). Ok I’ll admit it. I asked ChatGPT for that last metaphor because I couldn’t think of one that accurately portrayed the feeling of knowing that your chronic illness will catch up to you no matter how much it has improved. I recently had an accident where I fell out of my wheelchair and broke a couple of bones including a vertebrae in my neck and my femur. I know I know that sounds dramatic but the reality of living with brittle bone disease is that your body reacts in seemingly dramatic ways to something as benign as falling out of a chair.

As wild and horrific as it sounds, I’m used to it by now. I have my routine, I use my apple watch to call the paramedics and my mom and they usually take it from there. What I’m not used to is being an adult and having to continue on with all of my responsibilities as well as heal my body. In the past I would have relied on my mom and others in my life to take care of me while my only responsibility was to heal my body. In the past I didn’t have any other responsibilities, but now I have a job and bills to pay. It felt like I had to choose between my financial well-being and my physical well-being and there was no right answer. I could take a break from work and focus on my health or I could go right back to work and pretend like I was fine physically in order tomaintain my financial stability.

I guess what I am realizing more and more is that the world is not built for those with chronic illnesses/disabilities and it’s hard to keep up. It’s hard to keep pretending that your femur and neck are not broken and that your life isn’t falling apart. Much like the swan seemingly floating effortlessly through the pond while actually working really hard under the surface just to maintain the appearance that it is in fact a swan. (I wasn’t sure I liked that metaphor but now it seems like the perfect fit. Thanks ChatGPT!) If you have a chronic illness and are in the workforce I’m sure you know what I mean whether it’s a broken bone or another kind of flare you are faced with the decision to take the time that you need and risk financial instability or fake it til you make it (if that’s even possible).

Ultimately, I chose both. I chose to fake it til I made it and take care of myself. It truly felt like the only way forward. I needed to keep my clients/job and I needed to take care of my body. I couldn’t lose either one and I am so lucky that I was able to do so. So if you were hoping to find the answer as to which to choose, I’m sorry, I haven’t figured it out yet. I’ll let you know when I do, I promise. I just wanted to let you know that I see you and I feel you deeply and I struggle similarly and I hope you take comfort in that. You are not less of a person or a less successful person if you cannot work as much as other people with chronic illnesses. You are valuable to the world whether or not you generate an income.