When Chronic Illness Makes My Future Almost Impossible to Address

I was diagnosed with my chronic illness at age 14, and my life has been changed forever.

By far the largest impact it had on my life is on my future. I’m not sure anymore if I’ll be able to finish my schooling and lead a normal life. The thing about my chronic illness is that it steals my life. While this seems horrible, I can accept the present as it rolls by with some adjustments, but the future comes with uncertainty.

As a chronic pain patient, it becomes almost impossible to talk about my future because I can’t accept that uncertainty. In a matter of months or years, I may require brain surgery or end up in a wheelchair, but I won’t know until it happens.

There is always a level of uncertainty in people’s life, but this uncertainty can be foreseen. You can’t predict a car accident, but with a chronic illness you run through all possible scenarios in your head on repeat. I’m guilty of often running these through my head.

Unfortunately, so many of us can also be brushed of when we attempt to speak out about our illnesses. We’re told we’re faking it or that we talk about it too much, so these thoughts are bottled up. It becomes a vicious cycle as our worries are brushed off, making them even harder to talk about.  

While society preaches not to say anything at all if you don’t have anything good to say, sometimes the bad does need to be addressed. I personally put on a mask every day. I wake up and apply layers of makeup and a smile. But when I get home, I crash on the couch covered in braces and ice. That side I cover up is the real me, though, and I should be allowed to talk about my illness and my future no matter what uncertainty it holds.

I have learned to live in the present recently due to my unclear future, but one thing has become clear to me: Those of us with chronic illnesses need to address our concerns over our futures before they eat us alive.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.