When Another Person With Chronic Illness Judged My Invisible Illness
“You don’t have anything wrong with you. You have no issue walking,” he said with disdain for what I shared with him as I tried to empathize.
My word alone that I have a chronic illness wasn’t enough for another person with chronic illness, too.
Mine just happens to be invisible.
Sadly, I’ve become accustomed to others looking at me and automatically judging that I couldn’t possibly have health problems due to my appearance and age. It is highly frustrating and bothersome at times, but for the most part I’ve learned to shrug it off. After all, I do have an invisible illness. Others aren’t able to visually see that my body isn’t able to absorb nutrients fast enough to keep up with my short bowel syndrome (SBS) and that I frequently experience chronic nausea and pain. Or that my activities are limited and I have to carefully plan out my activities around restroom access. On occasion others may witness my difficulty walking when I’m experiencing a severe flare-up of my SBS when I’m forced to use the restroom every five to 10 minutes for hours and my body becomes so sore I can barely walk even if I wanted to, as movement agitates my short bowel particularly during a flare-up. Nor are others aware of my past medical treatment for colon cancer and the complications experienced or the future risk of additional cancers and complications.
It’s not right for others to make assumptions and judgements about what a person may be experiencing based solely on looking at that person, but it is understandable that others wouldn’t be aware without asking. It’s harder to understand, though, when the person judging another also has their own chronic illness. Those of us with chronic illness tend to bond with others with chronic illness as we find understanding, comfort and safety amongst each other. So I didn’t expect someone in a similar situation to judge me by looking at me in the same way as others without chronic illness frequently do.
There’s no question that continued education and awareness is necessary outside of the chronic illness community. And occasionally we’re reminded that continued education and awareness is also required within the chronic illness community.
When sharing with others, I believe we need to weigh our timing and our content. With many things in life, there’s a right time and a wrong time for anything, and this includes our education efforts. If it’s the wrong time, our “audience” may not be as receptive. Assessing the moment and the surrounding circumstances can help us gauge the right timing. Determining what and how we say will vary from situation to situation, but is nonetheless important. We don’t want to present ourselves as victims or as comparing ourselves to another’s experiences.
We want to be understood in our own right while respecting and gaining common ground with others. I think it’s important for our own peace of mind and well-being to remember that others may not be as open to understanding another’s chronic illness, and becoming angry and hurt in response is not helpful. Instead, let us try not to take this personally, but rather offer the understanding that we are not receiving from these individuals. And in the meantime, may we enjoy and encourage one another in our trials.
Follow this journey on Life’s a Polyp.
The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.
Jenny was diagnosed with the rare disease, Familial Adenomatous Polyposis, at age 8. Due to complications from her related colon removal, she was also developed the rare disease Short Bowel Syndrome. After six years with an ileostomy she now has a straight pull-through. Through Life's a Polyp, Jenny focuses on education, empowerment, and raising funds for NORD FAP Research Fund.
lifesapolyp