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Why the Ignorance of Others Inspires Me to Share About My Illness

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As I scroll through the various Facebook support groups for chronic illness, I find myself recognizing the pattern of people who keep their illnesses a secret. There are fears of repercussions at a job, seeing pity in the eyes of their friends and family, or the ugly words from someone who doesn’t believe their pain. We just want to be viewed as people, not illnesses. Although I understand completely, I couldn’t bear to hide my chronic illnesses anymore. Let me tell you why.

When I got my first chronic illness diagnosis, a mix of dread and relief filled my lungs. What would people think? Could they tell I was sick? On the other hand, I finally understood what was happening. At first, I tried to keep my mouth shut. I told my parents and my husband, but otherwise did not speak of being in pain, being exhausted, or the overwhelming depression that came with this life change. I avoided confrontation, but I alienated myself in the process. I vividly remember the moment that I decided I wasn’t going to hide away anymore.

As I started to make my illnesses known, I did face some backlash. The worry in the voices of people I told as they said, “Oh, gosh, I’m so sorry you have to deal with that,” made me feel like a social pariah. I also dealt with the other end of the spectrum from those who would say, “It can’t seriously be that bad. Stop dwelling in being sick.”

At first, I was furious. I would choke up, unable to find an appropriate response to the reactions I was receiving. I began to think that my honesty was a huge mistake. Had I forever changed the way these people would view me? Sure I did.

After months of feeling ashamed and feeling as if my illness owned me much more than I thought, I had an epiphany. See, before all of this, I had stopped writing for years. As my chronic illnesses took hold, I was too tired to come up with elegant sentences and exciting storylines. I stopped believing in my potential and my dreams. After all, I was nothing more than my diseases, right? No. I couldn’t accept that and I wouldn’t. The more ignorant those around me seemed to be, the more I realized how important awareness is.

The reason these people were ignorant is because these health issues fly under the radar. They are rare and poorly recognized. Professionals send patients from doctor to doctor, most of whom scratch their heads and call us medical enigmas. Those around us have never heard of rare diseases, let alone the impact on quality of life and function. As it dawned on me why everyone was so clueless, I made an important promise to myself. I would make it known that these are critical issues. I would spread awareness and helped those undiagnosed feel the courage to seek out valuable care. I frequently use the phrase, “When we know better, we do better” by Maya Angelou. If nobody knows how to spot these issues and how to address them, how are we ever supposed to bring it all to light?

Without spreading awareness, we risk building an empire of misunderstanding. When we speak up, we spread valuable knowledge that can help not only us, but also those out there struggling with understanding what is happening to them. We may be revealing a huge vulnerability, but we are also putting the ball back into our own court. When we bear our weak days and our strong days with pride and forgiveness, we show others inside details that can be a powerful tool to regaining our confidence in our abilities and disabilities.

With that being said, no one chooses to have chronic illness. Those who prefer to retain their privacy, that is perfectly acceptable, too. It can be extremely difficult to find any positive in these struggles. Sometimes it hurts to even try to explain it to someone. That’s OK. The more awareness we can spread, the more we open our doors to better understanding and support for everyone involved.

Getty Image by JNemchinova

Originally published: June 7, 2018
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