Wednesday, July 12, 2017

Why I Don't Want to Hear Your Scary Story About My Diagnosis

A couple of weeks ago my son was diagnosed with Lyme Disease. He came home from Scout camp and several days later had the trademark bullseye rash so we immediately took him in and had him started on treatment, hopefully soon enough that he will not have ongoing symptoms.

I posted publicly about his rash and diagnosis in hopes to spread awareness and help others notice if they find a similar rash on their bodies this summer. (You can find that post on Facebook here if you are interested). Within minutes of making that post, I began to be bombarded with people's comments, messages, texts and phone calls. It seemed that everyone that I had ever met had a scary Lyme story to tell me.

It was awful and inappropriate, however well-meaning the comments were. As a nurse, I well know how bad Lyme Disease can be. I certainly didn't need the reminders, again and again, while my son was being treated. It honestly set off a terrible anxiety that we did not need.

In order to set boundaries and let people know that the stories were overwhelming me, I made a post on my private Facebook page asking that people stop sharing the scary stories. The responses to that post were of even more people telling me all about the awful Lyme Disease experiences that they have had, as though they had not even bothered to read my status or, worse, that they did read it and still felt compelled to share the story of their sister's boyfriend's cousin who is has now been bed bound and is in constant pain due to Lyme Disease.


It's oddly as if people are so conditioned to tell us their sad and scary medical stories that they cannot help themselves. Any woman who has been pregnant knows this phenomenon all too well. From the moment we tell the world about our pregnancy, we are bombarded by horrific birth stories as though the stories themselves will strengthen us for childbirth. They do no such thing, of course. Instead, many women become utterly terrified of giving birth instead of feeling empowered by the women around them.

As a nurse, I have also experienced the frustration of my patients as their loved ones tell them about the essential oils that can "cure their cancer," the alkaline diets that "chase away dementia" and vitamin d drops that "work better than therapy and medication for severe depression". For many with chronic illness, it becomes damn near a full time job just listening to all of the suggestions that seem benign or helpful on the surface, but are often exhausting and simply confusing to the patient, not to mention often lead them to buy unnecessary and sometimes expensive "therapies" that most often do nothing at all to help. I've even had patients stop much needed therapies in favor of essential oils or expensive vitamins only to lose progress on fighting their illness. It seems that everyone is an expert these days, proudly bearing degrees from the College of Google Searches.

What is this compulsion? Why do we do it?

I don't have an answer to that. What I do know is that it must stop. We may have a story that we'd like to tell or a therapy that we hope might help. However, we must first ask ourselves if it is helpful and ask the permission of those suffering first. A simple, 'Would you like to hear about my "insert loved one here" 's experience with your illness?' or a 'I've heard about a treatment that may be helpful, would you be interested in hearing about it?' would suffice. It's quite likely that they've heard enough "experts" spout off on the subject for the time being.

Maybe in the sea of "experts" desperate to unload their experiences, they've been waiting all this time for a single, listening ear.

I often say that if being a nurse has taught me anything, it is that at the core of who we are, inside and underneath all of the bravado, each of us is just a scared little kid begging the world not to be alone in our darkest hour.

 If we are to be a true friend, maybe we can find it in ourselves to shine light onto our loved ones instead of throwing them into a deeper darkness. This is the time to keep our ears open and our mouths shut.