Why I Want People to Share Stories About Treatment Options

I have a mixed bag of invisible illnesses: hypothyroidism, idiopathic hypoglycemia, premature ovarian failure, allergies, a dairy sensitivity and fibromyalgia. I read a lot of articles about how other people navigate living with an invisible illness, and have extended that to reading about how people live with chronic illnesses that are visible, or who have children with special needs or who live with a disability. There are similarities in a lot of the unthinking comments that are directed towards these diverse groups, so a lot of the articles I read that proclaim, “Here are 10 Things You Should Never Say…” overlap.

One pet peeve across the board, something that seems to annoy everyone, is when a well-meaning relative or acquaintance says, “You know you should try (a gluten-free diet, acupuncture, exercise, vitamin B shots, occupational therapy, meditation, praying, psychotherapy, massage, a new specialist). It really worked for my niece’s husband’s mother’s student.” There is a collective sigh, a roll of the eyes, a polite redirection of the conversation, or if we are bold we respond, “If there was a miracle cure for this, believe me I have heard about it and I would have tried it.”

We want to be recognized as the experts of our bodies and our conditions. We know that the aunt who only sees us at Easter doesn’t have full access to our medical history, the long list of things we have and haven’t tried successfully. We may feel like someone else is acting as if they are more knowledgeable than we are, when they are not. We may feel like their suggestions are cavalier, and know that if we took their casual dinner-party advice it could turn out badly. We live with the consequences, not them.

There are many reasons we may feel justified in being annoyed by these encounters. But what if we are shutting down the communication of information that could be genuinely helpful? What if we don’t hear a suggestion that could have merit because we believe we know better? What if we stop ourselves from sharing good, solid leads on how to make life better for someone else because we don’t want to appear superior?

I am here to say I believe we do. In the last week alone, I realized my polite silence had kept me from sharing information with three different people I know and love that would have, or at least might have, made their lives easier. One was for a friend’s son who has autism. If I had shared what I knew sooner, I believe at least a month of aggravation could have been bypassed. One was a supplement that could help my mother with Parkinson’s disease that I didn’t share until this week. One was knowledge of certain foods that interact with a medicine both my brother and I take. I kept quiet because each person is very knowledgeable about their own challenges and who was I to even mention something? How presumptuous! But I believe my silence was more harmful that helpful.

Also, too, is the knowledge that I am going to be that random example you hear about next Thanksgiving. I am the niece’s husband’s mother’s student who went off of dairy and eased most of her fibromyalgia symptoms. I am that anecdotal story about the woman whose anxiety was almost totally cured by staying away from sugar. I am that person who had severe hypoglycemia that was made worse by her birth control pills, of all things. The one who takes seven supplements and exercises because it helps. I am the one who gets massages and even occasionally prays and feels better.

The thing is, the person behind that two-minute story is real, even though you only hear about her as a friend-of-a-friend. She probably went through hell, too, just like you have. What worked for her absolutely may be the wrong thing for you to try, and we shouldn’t just accept those stories without a critical eye. But what if sharing that story sparked a new idea, a new angle to consider, a new path to explore? What if going down that new path led to a new way to manage whatever challenge you are facing? Isn’t telling the story worth it?

Follow this journey on Kristin Wagner.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.