When Your Chronic Illness Changes Your 'I Can' Into an 'I Can't'
Before I begin this article, I should give some back-story as to what my condition is and how it affects me.
When I was 14 years old, I was diagnosed with Chiari malformation type 1, a herniation of the cerebellar tonsils down through the opening of the base of the skull (or foramen magnum). This can cause a blockage of cerebrospinal fluid, causing an array of symptoms. Although some symptoms vary from patient to patient, some of the main Chiari symptoms are headaches, dizziness, numbness/tingling, visual disturbances, neck pain, and ringing in the ears; all of which I have.
I also have postural orthostatic tachycardia syndrome (a blood pressure disorder where my blood pressure drops very low when I change positions), a low-lying spinal cord, a bulging disc and degeneration in my back. Although I have had these symptoms all of my life, they were never formally diagnosed until I was 14.
I am now 19 years old, and looking back on my Chiari journey, my life has changed quite a bit. I am now advised not to lift anything more than five to 10 pounds. Roller coasters are viewed as “at risk,” so now, I can’t ride them without worrying about how it would affect my herniation. Not many people want to make plans, not only because my schedule is hectic with work, but also because I can’t last long at certain places and can’t do certain things. For example, I once went on a bowling date, and ended up in severe pain for three days afterwards because I overextended myself.
This condition has increased in intensity and severity since my diagnosis. Some people have told me that I didn’t “start showing symptoms until” I was “diagnosed,” or I am “a hypochondriac.” That is not the case at all. You see, I had these problems before, but was told they were “growing pains,” and my headaches were coming from eye strain, or allergies, or stress… or all three. It wasn’t until I nearly passed out in school and couldn’t see that I finally had a brain scan. I became more vocal about my symptoms because I was afraid, and I wanted someone to understand.
When “I can” turns into “I can’t,” most people become angry, irritated, and quite selfish. Many people take your chronic illness as a personal attack, offended that you “don’t want” to hang out, when in all reality you are lying in bed trying desperately to just exist.
When “I can” turns into “I can’t,” some people stick around. Those are the people you hold close; the ones that continue to invite you places despite your work schedule that wears you out too much to do anything else, the ones that never make you feel bad for declining plans or canceling at the last minute, and the ones that accommodate their plans to meet your physical and mental needs. The ones that love you for you who are and don’t define you by your chronic illness are the ones that make this life worth living and remind you why you keep fighting.
When “I can” turns into “I can’t,” remember your self-worth, and that your chronic illness was never your choice.
We want to hear your story. Become a Mighty contributor here.
Thinkstock Image By: kameshkova