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


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


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

A man in a dimly lit room, his hands up to a mirror, showing the reflection of his face looking down.

When the 5 Stages of Grief Are Caused by Illness

One of the hardest issues facing someone with a chronic illness is facing what you cannot do anymore. There is a mourning and grieving process that so many of us face. When the 5 Stages of Grief Are Caused by Illness You go through the “five stages of grief.” Denial, anger, bargaining, depression and acceptance all rush through you [...]
27 Things People Don't Realize You're Doing Because of Hypermobility

27 Things People Don't Realize You're Doing Because of Hypermobility

Though the effects hypermobility has on your life are anything but invisible to you, others around you may not realize the kinds of challenges you’re reckoning with every day. While you’re trying to walk without dislocating, or readjust your sitting position for the hundredth time time that day, the people around you may have no [...]
leslie knope smiling and saying "everything hurts and I'm dying"

15 Memes That Nail What It's Like Being Asked 'How Are You?' When You're Chronically Ill

When you live with chronic illness, your health status tends to be “complicated.” Personally, I’m usually juggling several different illnesses, a bizarre assortment of symptoms, an infection or two and, on top of it all, whatever bug happens to be going around at the time, just for good measure. It’s a lot for even me [...]
a single green plant sprouting up from dark rock

What Rehabilitation Looks Like When You're Chronically Ill

When we find our abilities, independence and self-reliance diminished by the effects of a chronic condition, pain and/or disability, we look for assistance and ways to retain a measure of control and function. It can be however, that due to the nature of the condition and its progression, options are very limited. When that happens, a [...]