When People Think Doing Things With a Chronic Illness Is a Matter of ‘Trying Harder’

When I was 19, I was an independent, healthy woman. I could do what everyone else could do. I could drive, work and go to school. Everything was doable. I had plans like everyone else. Though I was bad at seeing them through, I did have them. Then in 2009, my life went through a series of accidents. While I’ve come to terms with it, there is one thing that still bugs me: trying to get people to understand.

Chronic illness has been life-altering. What I’ve done now I may not be able to do a few hours later. I have to take pause every time to judge whether the tasks are worth doing or not. Simple things like reaching up to the cupboard just above my line of vision, looking at the person next to me and much more can cause me violent and dangerous symptoms to spawn spontaneously. And those sudden symptoms are a blessing because at least I know what trigger them. Most times, these symptoms just grow for seemingly no reason to the uneducated eye. I lose more mobility and function over the week until I see my doctor. I’m not always so lucky, though, and I end up having my problems anyway.

Due to these violent, unpredictable symptoms of my disorder, keeping a job is impossible. It isn’t a matter of “trying harder” or “sucking it up” for me. When this first started, I did try to keep a stable job. I held a cashier position at Target. All my coworkers were really compassionate and understanding. But the longer I did even the menial physical tasks at work, the worse my health became. My symptoms became uncontrollable. In the end, Target decided that the best decision for me was to take an indefinite, unpaid medical leave until I got my disorder under control. It’s been six years, I’m still on that medical leave and they still won’t take me back.

School was the same. I’ve tried twice since my disabilities started to go back to school. I waited until I had a significant decrease in symptoms. When it seemed like I was in a stable enough position health-wise, I applied for school. I figured there was no harm in “desk work.” But my treatments were only hiding the symptoms. Eventually, it couldn’t hide them any more and my symptoms came back. I tried to keep going regardless. I had one more year before I got my degree. But the more I struggled to keep up, the harder it got. I stopped taking regular classes and went to online classes. Eventually I had to drop out completely when it became unmanageable. It was too much for me to handle on top of my school work.

I have fallen completely dependent on my mother for nearly everything you can think of that’s important for survival. If anything were to happen to my mother, I would be in horrible trouble. I can’t even begun to tell you how bad off I would be without her. Probably homeless… if not worse. Yes, I do have friends who love me, and I love them back very much. But no one I know is in a position to take care of me long term like that. They aren’t financially stable enough, or they have their own families to worry about. My mom can barely make ends meet right now, and she has a great job with a college degree.

We don’t know if this is permanent. What we do know is that it is going to take years to get some semblance of a healthy life back. And even then, I might never have the same functionality of people my age. It might even get worse if the treatments don’t work. My one hope for the future would be to get disability benefits. But even if I got disability, I won’t suddenly get a wonderful, easy life. I probably won’t ever be able to live alone. My doctor doesn’t want me to. He wants someone there to help when I have symptoms and help with simple tasks and transportation.

The thing I wish people understood is sometimes those things that seem doable to everyone else just aren’t doable for me anymore. “Sucking it up” just makes me worse and sets my recovery back even further. If I seem down, it’s because I’m remembering the life I had imagined for myself at this age. I wanted a good job with a partner, a family and a home of my own. However, that doesn’t mean I gave up and don’t strive to be happier and have goals. It’s just that my goals are now vastly different from the goals of an able-bodied person. And so are the journeys to reach them.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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