An illness or disability is considered invisible when the experienced condition is not easily recognized by an onlooker. These can range anywhere from fibromyalgia to lyme disease, depression, or chronic fatigue syndrome. A lot of invisible illnesses are hard to diagnose and once diagnosed, come with a haunting stigma from the general public. Although everything I can say here comes purely from my own experience, there is a long list of invisible illnesses and disabilities and every single person struggles with theirs to different degrees. However, speaking of my own illness I hope to give some sort of awareness for those who also live their lives confined within their illness’.
At 17, I was diagnosed with Chronic Fatigue Syndrome (CFS). It was a diagnosis that took 5 years for me to get. Being diagnosed with CFS is more or less a process of elimination: you get tested for everything under the sun before a medical professional will diagnose you. After hearing my long sought-after diagnosis I couldn’t help but hold back tears. I was so tired of being tired. I slept for over 10 hours every night and still needed to nap during the day. My friends seemed to be invincible while I was constantly struggling to lift myself from the sleepy haze covering my entire life. My school work, personal life, and competitive dance training all suffered from it. For the first time, I thought, I might get to be a normal 17-year-old. Everything came crashing down once I was told that there is no treatment for CFS and the advice my doctor gave me was to “Wait and hope it goes away”.
More than anything, I was frustrated with my illness. I couldn’t fathom my terrible luck to be diagnosed with something that only I can feel, no one else can see, and most people don’t believe is even real. I came to the conclusion that I would live like I just didn’t have CFS. I wouldn’t tell people about my illness and therefore would be unable to use it as an excuse for myself to slack off. This lead to me burning myself out so terribly that while travelling in Europe, between university semesters, I slept my days away or shuffled around with my eyes half open waiting to crawl back under the covers.
Once back at university, I realised I had to change my strategy. I didn’t have to use my illness as an excuse but I had to acknowledge that my illness was real and left me with very real limitations. I never scheduled myself in a class before 11:30 in the morning which made a huge difference. I also started to research CFS, something I should have done a lot earlier.
This led me to the spoon theory: a visual aid that breaks up your energy into a limited number of spoons. Once you run out of spoons, you can’t do anything else until you’ve recharged and you only have a given amount of spoons per day. You can borrow spoons from the future but then you’re left with less when the new day breaks. Although the spoon theory is highly controversial in the invisible illness community, it gave me a new concept to apply to my hectic university life. If I can’t make it to the gym for a few weeks because I was studying and working, that’s okay. If I eat a frozen dinner because it takes less energy to cook after having a midterm, that’s okay too. If I’m tired, I let myself nap because I understand that I need to recharge.
I was never guaranteed my health the way most young people are. I’ve been mad, embarrassed, and broken over this. I want to do everything: join every club, attend every campus event, hold a job, and be a straight A student. But as much as I want all these things, they’re simply not realistic for someone suffering with an illness, invisible or not. I’ve been given the short end of the spoon (pun intended) and need to balance that. It’s not easy but it is my life and it’s the life of millions of people. For any university students living with invisible illnesses, please know that you’re not alone. Understand your illness and get comfortable with it. If you seek to do wonderful things you can and you will, you may have to do them differently than everyone else, but that is more than okay.