Connecting with the Community After An MS Diagnosis

Emily Blosberg Health Guide
  • After being diagnosed with MS, I felt lost. I felt as though I couldn't tell anyone, or else they would treat me like I was broken. Was I wrong or what?!

    When I was diagnosed with MS, I was 15 years old and in the 9th grade. I was afraid people would treat me differently. I had already spent a year being treated like a baby, and didn't want that to continue. One day, during a school gathering, I took a leap. For days I tossed and turned at the thought of sharing my secret with the whole school. Finally, I found myself walking on stage. I grabbed the microphone, and I told my story. I described the challenges I faced, the struggles I deal with every day, and the worries I had. At the end of my presentation, I simply said, "I'm not looking for your pity. I'm just looking for your support."

    I was amazed at my peers' response! Following that day, I was not treated like a baby, I was not given strange looks for leaving the classroom or turning my homework in late, but I was treated normally. All of my worries...were for nothing.

    I encourage you to tell the world who you are. Tell your story, and do not be afraid of how people will treat you. The best thing I have done for myself is to share with everyone, what I am going through. My friends all understand when I need to leave the classroom to go lie down in the nurses' office, or when I have to say 'no' to their invitations. Sometimes, my fatigue overcomes me and I am unable to participate in normal high school activities. My teachers understand when I am unable to finish assignments on time, but that I will get them done as soon as I can.

    I have found that the more people I tell, the easier it gets. Each time I tell my story, the MS monster gets smaller, until I almost forget I even have MS. I have been surprised at the number of people who encourage me to continue sharing my story, and who are so supportive of me. Through sharing my story, I have made connections. If I had not shared my story, I would not have met the amazing people who share this disease with me.
    I have also found that through learning about MS, it is much easier to face. It is easier to explain it to people in my community, since it is something I understand. Take time to learn as much as you can about your illness. When I was diagnosed, I was fortunate (?) to have a parent with MS who was a role mode for me. My dad showed me that MS does not have to be my life, and how I can work around the symptoms.

    I also went through two years of physical and occupational therapy. There, I learned about time management, energy management, and how to manage my symptoms. If I know that my schedule is going to busy, I need to plan accordingly and pace myself to make sure I will last through the activities. Education is truly powerful when fighting a chronic illness. The more you know and understand, the more manageable it will become and the more comfortable you will be sharing with others. If you have more of an idea of what to expect, surprises will be few and far between. Yes, MS is unpredictable, but there are a lot of "known" things about it too - inconvenience made easier with careful planning and anticipation.

    YOU are your best advocate. You know what is best for you and what can help you succeed. Others cannot read your mind; they do not know what you are feeling or thinking, so you must tell them. Also, don't be afraid to ask for help! No one can fight this alone. We all need the community to fight with us so that we can achieve. Look for and thank those whom you trust, and who trust and empower you to be more who you need to be.One last note that I want to leave you with, is get involved. Through volunteering, I have learned more about MS, and I have listened to many stories. Those connections have made more of a difference than I thought they would!

    I have discovered that I know many people with MS. Learn from others who have MS, and learn great ideas for their success in life.

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Published On: April 16, 2014