Tell your story on MyCounterpane

Sharing your emotions and hearing others may be some of the best medicine yet.

As someone who truly believes that people with multiple sclerosis are “experts” on this disease, having much to share with each other that can be a huge factor in quality of life, I am thrilled that my friend, Kate Milliken, started MyCounterpane. MyCounterpane is a place where people with MS (and other chronic diseases and symptoms) can tell their stories.

One thing that makes MyCounterpane so engaging is that it is organized by emotions.

You are able to follow a person’s journey and see the ups and downs that characterize life with MS, but you are also able to find the emotion that describes your own state of mind at a given time and read what others have to say about their experience grappling with feeling lonely, sad or guilty. If you are looking for something uplifting, there are also plenty of entries by people who are happy, hopeful or determined. If you have something to share with anyone who posted, there is a space to comment on each entry.

So, go take a look – post your own entry about you. It will soothe your soul and may be just what someone else needs at a moment in their lives.

Here is what Kate has to say:

Boom.

It all goes into slow motion. "This can’t be happening,’ you think. "Wait, this is really happening.  To me. I am now one of those people." So this is what it feels like to receive a frightening diagnosis? But I look the same. Everything around me looks the same. What is MS anyway? How am I going to tell my family my friends? What will become of me?  

Welcome to your new unchartered world of MS.

Time moves forward and you are numb (literally and figuratively). Medicine and doctor appointments.  People trying to do what they can to ensure you live a long, healthy life, with a progressive illness.

But despite the treatment, you still feel alone. Scared. And helpless. You can’t help but think, now what?

Will medicine be enough to heal you?  I have learned the answer is no.

In the years since my MS diagnosis, it’s become clear that there is more than just conventional medicine to treat your illness. There’s storytelling.  Yes, storytelling and this is why I founded MyCounterpane.  First hand accounts of other personal experiences made me feel better and now there is scientific evidence that suggests that hearing others speak about their experiences is actually healing for you. Boom!

You have a symptom. You go to the doctor. You’re diagnosed with multiple sclerosis, and you are suddenly thrust into an unchartered world.

Then comes the prognosis. Medicine and doctor’s appointments.  People trying to do what they can to ensure you live a long, healthy life, despite your illness.

But something is off. Despite the treatment, you still feel alone.  And scared.  Even lonely. You can’t help but think, now what?

Will medicine be enough to heal you?   I’ve realized the answer is no.

In the years since my MS diagnosis, it’s become clear that there is more than just conventional medicine to treat your illness. There is also storytelling.  Yes, storytelling and this is why I founded MyCounterpane.  But now there is scientific evidence that suggests that hearing others speak about their experiences is actually healing for you.

In fact, according to Dr. Lissa Rankin, MD, that hearing about others’ experiencesit  “may be the most powerful medicine on earth.”

And it’s not just any type of storytelling – it’s the kind where you actually hear the story being told. In essence, hearing is healing.

According to Rankin, here’s what happens when you tell your story:

“Every time you tell your story and someone else who cares bears witness to it, you turn off the body’s stress responses, flipping off toxic stress hormones like cortisol and epinephrine and flipping on relaxation responses that release healing hormones like oxytocin, dopamine, nitric oxide, and endorphins. Not only does this turn on the body’s innate self-repair mechanisms and function as preventative medicine—or treatment if you’re sick. It also relaxes your nervous system and helps heal your mind of depression, anxiety, fear, anger, and feelings of disconnection.”

Dr. Thomas K. Houston, a lead author of a 2011 study examining the effects of storytelling on patients with high blood pressure notes that “telling and listening to stories is the way we make sense of our lives.”  This is especially true with a new diagnosis, as it is often a difficult process to digest.

Luckily, we now live in a world of modern technology. You no longer have to leave your house to get the support you need. It’s possible to build deep connections with people in a similar situation, just by listening to their experiences and sharing your own.

I’m proud to say that our recent campaign, Hearing Is Healing,MyCounterpane was designed to offer you the benefits of such storytelling. Our goal is to offer newlywants to offer newly diagnosed patients, as well as their experienced counterparts, a chance to heal themselves and others through the power of their own experience. Through meeting many people who live with MS (directly and indirectly) that we have bad days, but also good ones.  We fight back from adversity.  We gain perspective and we are all out to help others as they navigate we we’ve come to know.

By providing a video tool, we want others to hear and see what you are sayingyour story broken into the emotional highs and lows. We want patients and caregivers to be soothed by the fact that others have come before and survived, and so will you.

Because this much is true: hearing is healing and your voice is more powerful than you think. 

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