Navigating What I Tell Others About My Chronic Health Condition
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?
Photo submitted by contributor.
As someone who has struggled with chronic illness since I was a teen, I have been following The Mighty for quite some time. Sometimes the articles inspire me, and sometimes they just let me know I'm not alone. Reading articles from The Mighty community has definitely made a positive impact on my life, and I appreciate those who have been willing to put their heart on their sleeve and reach out with their personal stories.
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