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.

 *sigh*

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. 

12 comments:

  1. I am SO with you about the essential oils, vitamins, magical foods etc that patients are told they "really must try." So confusing for the patients, so frustrating for the doctors. Margaretha

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  2. This must have been an awful time for you. I do hope things are going better for you now.

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  3. I know exactly what you mean, Amanda!! When my mom had shingles, everyone wanted to tell me their story about it instead of listening to mine.
    Maybe it's showing that we are too self absorbed in society now??

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  4. People just love to over-share and they act as if we are completely stupid about stuff that's in our wheelhouse. In some tweaked way it's well meaning. But stupid.
    Carol C. ( I know, i have to change the G name)

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  5. Sigh is right. Maybe the just wanted to make you feel a little better in the 'oh it won't be as bad as this' story?
    I don't know. Either way I hope he is on the mend!

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  6. Difficult one. I was amazed when I read some comments on your post re Lyme Disease - I don't blame you for being a nervous wreck worrying about your son! i always think if you can't say anything nice then don't say anything at all.... I do hope your son is feeling a lot better

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  7. People just love to have one-upmanship I think and what about the horror stories they can't wait to tell us about childbirth! Hope you son is on the mend and you are okay.
    Sue from Sizzling Towards 60 & Beyond

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  8. I hear you! My brother has cancer and I heard more than I wanted to hear when he was diagnosed.

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  9. I don't know what it is that causes this. I've been on the receiving end and I've probably, unknowingly, been on the giving end too. I think it's also closely related to sharing more and more about your health problems the older you get.

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  10. I have chronic fatigue syndrome/fibromyalgia, I was diagnosed in the late nineties. I have been told that if I exercise, eat more greens, take this vitamin, mineral, herb (and some costing the earth) I will be cured! I also have a blog on diy, home decor because it is my passion. I have toyed with the idea of having a small section on my blog to chat to others and hopefully inspire each other to find joy in creating. After reading your comments I'm not so sure. These illnesses are called invisible illnesses and therefore misunderstood. I'm 62 now and emotionally and mentally I have never felt better because I have been able to find joy and if a negative thought comes into my mind I switch it to a grateful and positive one. That is really what I want to share and still may do. I feel for you so much because I know as a Mother and Grandmother, seeing them sick, for me anyway, is devastating. I would rather have it myself than watch them in pain. I wish you all the best and hope your son improves over time.

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  11. And don't you think also, the better people's lifestyle is, the more they moan and whinge? Some people wouldn't know what to talk about if not their disorders and pains. It doesn't make anybody's situation any better to spread horror and negativity. Wishing you and your son good luck and the very best.

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