Invisible Illnesses and Spoonies
First things first, what are “invisible illnesses?” Well, “invisible illness” is a loose term used to describe chronic illnesses that don’t always–and sometimes never– have physical symptoms that people can see. Mental illnesses like depression and anxiety and also autoimmune diseases like rheumatoid arthritis or lupus, are just a few tiny examples in the vast world of chronic illnesses.
You might sometimes come across the term “spoonie” as well. Spoonies are people who have chronic illnesses, invisible or not, and we all try to slowly navigate the world of what seems to be never ending judgment from able-bodies while awaiting medical answers. Where does the term “spoonie” come from? There’s definitely a more eloquent explanation somewhere else, but basically, spoons represent energy and health. On a good day or good week, we all start off with 12 spoons. An able-bodied person may use one or two spoons throughout the day when they go to work, get a workout in, or do something strenuous, but it gets replenished when they sleep. They wake up the next day with 12 spoons again. For someone with a chronic illness, each task we do can be a strenuous activity. We may use up spoons just by getting out of bed, making a meal, and cleaning up afterwards. Our spoons don’t replenish easily either. Some may take hours, days, or even weeks. We have to conserve our spoons because as we lose spoons, we may get weaker and sicker.
My Journey
I’ve been struggling with dealing with my illnesses for the past couple of years. It was only recently when a friend told me about the Spoonie community, did I actually start to feel… ok. Not “ok” in the sense that I have the right treatment regimen and my health is fine, but “ok” as in, I’m not as lost anymore in the suffocating world of medical invisibility. I started to document my process of learning how to create with my invisible illnesses to not only ease my own anxiety of having slow progress in my art, but also show others (if they have the time and curiosity to read my blurbs) a glimpse of how not everyone’s timeline continuously moves forward, and that’s completely ok.
Note: I’ll be substituting the names of illnesses with A B C, etc. This post is not intended to render medical advice but rather to share an experience.
A few years ago, I felt my body deteriorating. At the time, I was lucky enough to be on a great health insurance with my school. I saw doctors that actually felt there was something wrong and didn’t just tell me “it could be stress, irregular period hormones, or just complications of being overweight.” I was sent off to specialists, and the first round of doctors told me that I had “A.” I felt received because it seems like everything was finally answered. However, quickly after, I lost my school insurance. I couldn’t afford to continue seeing that doctor or any specialists for treatment, so I was told to just manage my stress. Things seemed stabilized for a while. A few flare ups here and there, but they were manageable. However, after working and living in horrible environments, I started noticing new and worse symptoms. After scraping money together to go back to specialist to get some sort of idea what was happening with me, I was given a list of new illnesses. All of a sudden, I had “A” “B” and “C”, but after I told doctors I would not be able to afford continuing treatment, all my illnesses were all magically due to stress and my weight. Doctors’ (and everyone under the sun) suggestions? Simply de-stress and lose weight. It’s funny, isn’t it? If you have money, here’s a rigorous treatment plan for your illnesses we have diagnosed you with. If you don’t, it’s probably manageable by eating healthier (aka food that costs more) and working a less stressful job, or don’t work at all.
I feel there’s always this sense of patient blaming when you talk to someone who cannot put themselves into a disabled shoe. Why not just go to a doctor and get help? Why not just try yoga? Why not just lose weight or have a stress-free job? None of those are a luxury. Health care, weight loss, stable workout routines, and stress-free jobs are privileges. Since those are privileges I do not have, I had to, and continue to, find ways on how to live with that.
Since my diagnoses, I’ve experienced the extremities of my own health. Great days can be strung together for months with aches and pains that are tolerable with pain medication and acupuncture. Bad days have symptoms that render me shaking in pain from head to toe and being on bedrest for days while I just disappear from everyone. But what kills me the most is the mental pain that is caused by the physical. More often than not, my symptoms seemed to attack my hands and arms the most. As someone whose creative outlet is nail art and drawing, it’s been devastating.
Bad days prevents me from opening my hands or putting pressure on my muscles. That means, no chopsticks for eating, no typing, and certainly not holding pencils or thin brushes to paint nails. There was a point where I gave up and was so frustrated, I sold and gave away all my art supplies— once my tools to escape the anxiety of everyday life. Seeing them on my desk without knowing if my pain would ever go away hurt my heart as much as it physically hurt my body.
I spent a good part of the next year trying to work my way up from rock bottom. After months of weekly treatment that I was able to get a little financial help with, I finally started making my way up the hill. It took a while, but I got through it. I learned that my bad days came in episodes. While I have no way of knowing how long an episode will last, I now know they do come to an end.
Following each episode, I almost always have to re-train my hands and the rest of my body in some way. Sometimes, I can go back to typing or pick up a brush right away and start with the basics, like painting solid colors, then graduate onto nail art. Other times, I start with just sitting at a desk for a few hours, or holding a colored pencil and spend days practicing and reteaching my hands how to control applying pressure to create fundamental color gradients or, periodically, simply draw in a straight line. This is the part that takes a huge mental toll on me. For “normal” people, progress seems to be linear. For me, I feel like I have to start from square one all the time. I get frustrated at myself for not being able to perform simple, rudimentary things when I know I am capable of many steps ahead. Then, doubts start setting in. Can I really perform advanced steps, or did I just get lucky a few times? The imposter syndrome really gets the best of me at times like this.
Thanks to the Spoonie community, I finally feel heard and safe. I learned to accept that my imposter syndrome is just a syndrome, that most doctors suck and don’t have the patience to diagnose you or give you a proper treatment, that symptoms and illnesses are still valid despite all the doubt and judgment everyone gives, and that a lot of wonderful people are on this rocky journey with me. Thanks to everyone strong enough to share their experiences, I’m on the way to learning how to be kinder to myself. I’m learning to accept that progress is different for every single person. And I’m learning how not to take people’s opinions to heart too much. I hope by creating the Sit With Chris blog, I can be a helpful hand to other Spoonies out there.
Sit With Chris 