How Multiple Sclerosis Helped Me Like Being Different in a World of Copycats

I knew I was different from the start.

In grade school my best friends were taller. And thinner. They had cute button noses and long straight hair that glistened in the sun. They’d do that thing young girls do when they want to attract attention by throwing their head in a circular motion to get their hair to fall into place over one shoulder.

I could never do that. My hair was curly and never moved. Easy to take care of, but not sexy. Three days a week, you’d find me in Hebrew School. In our town everyone’s last name ended in a vowel, so observing a different faith made you an instant outsider. While my friends were playing after school, I was cooped up in a classroom learning a foreign language. But being different in my youth was nothing compared to a seminal event of my young adulthood.

It began when I repeatedly collapsed on floors in public places, my legs buckling beneath me without warning as onlookers glared while I awkwardly groped for anything to help me back on my feet. Impolite whispers about the shameful drunk squirming on the ground drove daggers into my soul.

Several doctors examined me, and I learned quickly that I had an unpredictable, incurable disease called multiple sclerosis. There was and still is no cure. The doctors could only prescribe steroids and rest. I felt completely helpless. At 28 years old, that’s a hard pill to swallow.

I was officially disabled. This uninvited guest forced me to miss countless social gatherings because being hooked up to a medical pole pumping steroids into my weakened body was not the fashion statement I was looking for.

It wasn’t until I reached the age of 50 that I was smacked on the head with an “aha!” moment. I saw with great clarity the path that had been chosen for me. By making me different, life was grooming me for a higher purpose. The lessons I learned, the emotional angst I endured and the courage I gathered taught me to love myself exactly as I was.

I finally made peace with my curls. I am proud of my religious heritage. And my disability has made me a stronger person. My mission now is to help others in the disability community because I’ve walked in their shoes. Now I finally know that being different in a world of copycats is, for me, truly a blessing.

Here are my thoughts and inspirations for anyone living with a disability:

Mourn the losses. Give yourself permission to mourn your losses. You’re only human and it’s a powerful exercise to hold a pity party for yourself. Eat some chocolate. Stay in bed and watch old movies. Start journaling. Call a friend. Watch the sunset. Play with your pets. Do whatever makes you feel good. You deserve some me time to help you cope with your diagnosis. Doing this may help you get to the other side of any initial sadness, frustration, anxiety or depression you may be feeling. Don’t allow the party to last too long. It’s time to move on to…

Acceptance. It’s hard to accept that your life changed on a dime the moment you were diagnosed. I could offer you dozens of platitudes such as “Everything happens for a reason” or “Happiness can only happen in acceptance,” but I hated hearing them as much as you probably do. I believe the key to acceptance is realizing that life goes on. You still have abilities despite any challenges, and you will always matter. Always.

Awareness. Stay aware and curious about your illness. Knowledge is always power and will help you put together a medical team you can count on. Stay on top of the latest research and medications. Staying aware is your best weapon toward living a quality life within your new normal. An informed opinion is your best friend.

Communication. Receiving a diagnosis is a shock. It’s important to communicate your feelings to others. Don’t go it alone. Surround yourself with loved ones to lean on. Search for local support groups or a qualified professional therapist. There are countless ways to communicate your feelings in an effective way that will ultimately help you cope with your illness. I highly recommend finding your own support system, whatever that is, to help you through your darkest days. There are no gold medals for going it alone.

Find inspiration. I am a spiritual being. I love being inspired by books, tapes, lectures and loved ones. I love Elizabeth Gilbert, Brene Brown, Don Miguel Ruiz and Jon Kabat-Zinn, to name a few. I also admire people who, despite physical or emotional challenges, continue to live lives filled with passion and hope. They are not rich or famous, but quietly choose a life filled with joy, love and grace.

Love yourself as you are. It took me a long time to finally accept that my body is what it is. Learning to accept yourself as you are is important if you want to live a happy life. No one escapes this world without adversity. Learning to love yourself helps build confidence, self-esteem, productivity, and strengthens your relationship with family and friends.

You can do it!

Follow this journey on An Empowered Spirit.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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.