You know that office at your school. It might be called "Office of Disability Services" or something else. You may have registered with them because you had a 504 in high school for your chronic condition. If you were like me, when registering, you thought to yourself "disability? but I'm not disabled." When you apply to any job they ask if you identify as disabled. If you have one of the conditions listed you have to click that check box. These things can be confusing because having a disability doesn't always mean you've truly felt disabled.
Many chronic conditions are extremely manageable. With medication, diet, or other treatments; symptoms can be effectively controlled. In my own experience, my symptoms were controlled for the majority of my life; despite having severe Crohn's Disease. From the ages of 7-11 and 13-19 I lived a pretty normal life except for a few doctors visits every now and then and regular medication administration. I didn't experience severe symptoms or have my daily life interrupted. I could eat what I wanted and run around like all other kids.
It is shocking when this reality fades. When the medicine stops working and all of the sudden you're left to battle all the symptoms that come with your diagnosis. It might not be as hard as you thought it would be at first. I could fight through the pain for a lot of days. I went to work, I did school, I tried to hang out with friends. As things got worse though, these simple things became incredibly difficult. The moments when I realized that someone else could do something that I couldn't were continuously devastating.
Realizing that your life is controlled by some mysterious malfunction inside your body can not be put into words. It's like your free will is completely taken away and theres no one to blame except for your own flesh. Some days, I only had enough energy to take a shower, and barely. Some days I would have to sit in the shower because it was too hard to stand. Walking to the dining hall at college twice a day became a great feat for me. It would be a special day when I had enough energy to go take a drive to a coffee shop. On my 20th birthday, I simply could not get out of bed because I kept fainting when I tried to stand. I resorted to eating goldfish from the window sill of my dorm room all day. During one particularly traumatic night, my friends tried to run across the cross walk as the light was changing. I attempted to follow but my legs gave out and I fell in oncoming traffic.
It sounds like I'm being dramatic but I'm really not. My situation was extremely severe and I should have sought after more serious treatment sooner, but I think many can relate to the overall helplessness that is felt when truly experiencing a disability. It sneaks up on you and all of the sudden it feels like you are trapped by an invisible force. Daily life becomes a challenge and there is often no immediate solution.
As I've previously addressed, everyone experiences their chronic illness/disability differently. There are varying extremes for each individual. Everyday is unique and so are the challenges that come with it. It is important to recognize the uncertainty that a person battling a chronic illness may deal with on a daily basis. Getting out of bed in the morning isn't always a given. Ability can leave just as quick as it comes.
It may seem obvious, but being disabled by a disability is why systems such as the "office of disability services" exists and why the ADA was passed. These things protect people who have a disability and also those who may not always feel disabled. Always register with these services, even if you don't need their help at the moment, and never forget to advocate for yourself.
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