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MyCounterpane Guest Post: How Sharing My MS Story Is Helping Me Cope

We are excited to use the blog at MyCounterpane as a space where our users can showcase their own moments of discovery. Here, Diana Frustaci writes about how sharing her MS story with others has improved her life.

 

 

 

I was diagnosed with multiple sclerosis amid a tsunami of tears. The doctor tried to sooth me with kind words and a hug.

"It's going to be okay, Diana. Everything is going to be okay," she said. I continued to cry. "Thanks," I gurgled.

The year was 2012 and I was 27-years-old. I was engaged to be married and was busy planning our wedding. My days were spent stressing over flower arrangements, transportation to the venue and my hair and makeup. All very important things at the time I'd like to call BMS (Before MS).

But then my eye started to hurt and before I knew it, I was visiting a specialist who diagnosed my optic neuritis and urged me to visit the emergency room STAT. (I asked if it could wait. It couldn't.)

I can't even say my worst fear was realized because before this moment, I had no idea what optic neuritis was or even what MS was. That was like ALS, right? My life was over, right?  I was pretty sure I was on borrowed time, as they say.

I'd like to say that I embraced my MS and made it my life mission to figure out everything there is to know about the disease. But I didn't. Instead, I hid in denial, fear and embarrassment. I didn't want to believe I had MS while at the same time I was terrified of it. I called "it" Freddy Krueger, the disease that slashed my brain and made it hard to think clearly. Concentrate. Remember. Focus. And because of this difficulty, I was ashamed and embarrassed. I felt stupid and dumb.

I didn't want people to know about these challenges I was experiencing. But this worked against me since I am a natural sharer. I had a blog at the time where I shared true stories about my life. The posts were mostly humorous interactions with my husband and mother and I felt that not sharing my truth made me...a fraud. It was a depressing time for me.

I had to figure out a way to get over it and so I went to a lot of therapy. One day, my therapist asked me why I was so afraid of disclosing my MS, (MS now also stood for Major Secret)

"Would you be as scared to tell people if it was cancer?" she asked.

I thought about it. No, I wouldn't be as scared.

I thought a lot more about that question after our meeting. Then one day I just said eff it, I'm going to tell my story. I was tired of being needlessly worried. I was ready, challenges and all.

Sharing made all of the difference in the world. I wrote a blog post explaining my diagnosis and I shared it on Facebook. The responses were overwhelming.  Everyone wished me well. People I wasn't even close to offered me their support and connections. A college friend was married to a scientist studying MS. Did I need any help? If so, just reach out. Another high school friend was a neurologist. She told me to take vitamin D and email her if I had any questions. The list of help can and does go on.

After that I wrote a post for the Huffington Post that explained how journaling my feelingshelped improve my marriage. It is this post that led me to meet Kate Milliken, founder and CEO of MyCounterpane.

When Kate invited me to join her community, I was excited but hesitant. While I have shared my MS story, it has always had a positive spin. Something I've learned or how it has made me more grateful. The sharing comes at a time when my hindsight is 20/20 and a lesson has already been learned. But recently I've been feeling the burden of my limited sharing. I'm feeling like maybe I need to open up some more. Not for others but for myself. If it helped the first time, I'm betting Sharing 2.0 may be even better.

I'm still on my journey and I have more to experience, more to discovery. I'm up for it, whatever it may be, and I know one thing is for certain: whatever will happen, you'll be hearing about it from me.

 

 

 

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