My support team

My Support Team

by Stephen Moore

When I was diagnosed with Dermatomyositis in 2012 at the age of 25, I felt a roller coaster of emotions.  At first, I could not even pronounce the illness, let alone fully comprehend what this meant in terms of my health and well-being.  For the first time in my life, I felt very uncertain about my future and what path lay ahead for me.

I did some soul searching and decided I was going to take this illness in stride and show everyone who the “new” me was.  The only problem with that idea was that I still wasn’t completely sure who that  “new” me was myself.

However, with the help of my family, friends, doctors, classmates, and organizations like Myositis Support and Understanding, I was able to learn more about my illness and in turn more about myself.  I then went online and watched videos of people diagnosed with myositis telling their story.  I quickly learned that myositis presents itself in individual ways for each person.  However, I was shocked and amazed when I watched these videos because I immediately identified with these seemingly strangers and shared their emotions, concerns, and feelings.  It was as if we shared some distant connection, and for the first time, I finally started feeling like I wasn’t all alone in having this illness that I still have to help my parents pronounce correctly.

To this day, it is still a constant learning process with new treatment plans, but I knew that if I kept a positive attitude and outlook, good things would come.  I knew I had this great support team that really helped with finding my “new” self, and this has pushed me to help others in need who have been affected by myositis.  This led me to contacting MSU and they sent me some information and I joined immediately!

While joining, I was informed of the share your story campaign and the wonderful community, and I thought what a great way to spend time with people just like me.  But then it hit me!  This illness isn’t just affecting me, and this community’s purpose is much bigger than just to help those diagnosed with myositis. It gives the opportunity for my support team to speak with families, friends, and classmates of others and share their stories along with their concerns and feelings.   Whether we like to admit it or not, this illness has changed the lives of everyone on my support team in some aspect, and this community is a great way for each person to self-identify and share comfort in knowing that they are not alone.

I was a little hesitant to share my story at first, but once I did all these people in my life were so supportive and happy that I was out telling my story.  I received numerous emails and texts saying, “Way to go!” and “Thank you for telling others.”  These are the same people that would stand by my hospital bed, take me to my doctor’s appointments when I was so sick that I couldn’t move, and the same people that have helped identify the “new” me.  This community is for them, but more importantly, to show support for all those people that have had to make major to even subtle changes in their life due to myositis.

I also now wear my wristband from MSU every day as constant reminder for all the help that others have given to me, and to remind myself of one of my favorite pledges every morning.

This is the beginning of a new day. I have been given this day to use as I will. I can waste it or use it for good. What I do today is important because I’m exchanging a day of my life for it. When tomorrow comes, this day will be gone forever, leaving in its place whatever I have traded for it. I pledge to myself that it shall be gain, not loss; success, not failure; in order that I shall not regret the price I paid for this day.



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