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Navigating What I Tell Others About My Chronic Health Condition

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One of the things I see being asked by those dealing with severe health issues is, “How much should I share with my friends, family, and general public?”

The short answer is: Whatever you are comfortable with and that may vary, season to season.

When I was first diagnosed with chiari malformation, and told I needed brain surgery, the circle that I shared information with was very small. Only my closest friends and family knew details. I was part of several clubs and activities, and they were aware that I had some “health problems” and that I had to take some time off. I discussed the need for some adaptions and shared what was going on with the director of the Choral Society I was part of. At the time I was landing solos in the group, so with my special privileges I was considered “teacher’s pet” because they didn’t know what was happening, and I shrugged off their jabs. Some other groups started to think I was lazy and didn’t care about fulfilling my commitments, due to missing projects or rehearsals, and I didn’t defend myself.

So why didn’t I explain and clear the air? I was a 16-year-old athlete when my doctors informed me that my spinal cord was damaged and deteriorating. Seventeen, when I was informed my brain needed more space and I was going to have urgent surgery. I didn’t know what these conditions were, and what they meant for me or my future! How could I possibly explain all of this to anyone else?

Eventually, I began to open up, and even spoke at our community college, and a local health fair that was hosting educational booths for medical professionals. I started sharing my medical blog with more people and stopped hiding my day-to-day life on social media, and used my wheelchair around my friends. Since I wasn’t trying to keep my declining health a secret anymore, I applied for a service dog to help me get around both walking and when using my wheelchair.

Then, over time, something began to really eat at me. A couple years into dealing with this downward health spiral, the questions that grate a chronic illness patient’s sanity started popping up everywhere: “Are you doing better?”, “How are you feeling?”, “Have you tried ___?” I mean, come on people, we’ve talked about this! My illness is permanent and degenerative. I feel terrible. and yes, I have tried it … all of it. So eventually, I went silent again. What was there to say anymore? My health changes moment to moment, I see doctors all the time, and generally I just don’t have any good news. Who wants to hear about that?

Now, as you can see, I’m talking about it again. My body may be a constant source of trials and bad news, but I am still going and I want to encourage others that life can be beautiful, even when it is hard and it hurts, and it never gives you a freaking break. I’m 32 and my body functions about as well as some great-grandparents I know, but I have a wonderful family, amazing friends, the goofiest pets, and a desire to keep pushing myself forward, even if the journey isn’t what I imagined it would be.  This season is a sharing one.

Photo submitted by contributor.

Originally published: March 10, 2021
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