I never imagined that writing about my personal life would catch the attention of a global health-care foundation and turn me into a globe-trotting, public speaker at an international medical conference in the Middle East. But in this social media age, getting thrust onto the international business stage is possible—even when you least expect it.
I was born with thalassemia, one of the most common genetic blood disorders in the world. There are three versions of the disease: minor, intermediate and major. Those living with thalassemia minor are typically unaware that they have the illness. While those who have the major form, like me, live with a dysfunctional bone marrow that produces misshapen red blood cells that cannot transport oxygen to cells, thus requiring triweekly transfusions for survival.
Estimates indicate that at least 12 children suffering from thalassemia are born every hour around the world and almost 490 million are carriers of genetic hemoglobin disorders globally. While bone-marrow transplants and new gene therapies have led to the potential cure for some patients, most who inherit the disease will die from complications.
I started blogging and sharing my experience on Facebook and Twitter. In April 2013, one of my Facebook posts inspired a message from Riyad Elbard, president of the Thalassemia Foundation of Canada, asking me to share lessons on emotional wellness, a topic that I write about, at the Thalassemia International Federation World Congress, which took place in Abu Dhabi, United Arab Emirates, in October.
Elbard mentioned that he enjoyed reading my blog posts on Facebook and thought I could offer a much-needed message about how to thrive with medical challenges. Simply put, emotional wellness means embracing, rather than denying emotions, so we learn to cope with stress and anxiety in a way that results in a positive approach to life. Freedom from negative thoughts and behavior patterns leads to emotional wellness.
Chronic illness causes emotional trauma, but since I've been dealing with my illness since birth, I've taught myself many coping mechanisms that helped free me from the depression and anxiety faced by most newly diagnosed patients. I started blogging as a way to broaden the message of emotional wellness.
First, I recognized how fearful I was to talk about my illness and knew that most others with the disease also felt the same way. I knew that was no way for a person to live, and it was worth sharing my personal stories if it meant leading to change in the way other people viewed themselves.
Second, I noticed that most newly diagnosed cancer patients are at odds with their need for medical treatment. I see them when I go in for my medical appointments and I have become friends with many over the years. Older patients have difficulty accepting that they are sick and this can result in extreme anxiety and depression.
My blog intertwines personal stories with ideas learned from my days in graduate school (I received a Master of Social Work degree with a concentration in clinical psychology). Every post is created to share an anecdote from my life and offer psychology/behavior modification techniques that can change the way a person thinks and acts.
At first, I was extremely hesitant to present at the conference. I had never spoken to an international audience and I had never traveled to the Middle East. Fortunately, my social media interaction helped me realize that my stories were already resonating with people across cultures.
To prepare for my presentation, I decided to first get a read on the worldwide thalassemia population by way of Facebook. I went on to Facebook thalassemia groups and simply asked, "What are the biggest emotional/psychological challenges for thalassemia patients?" Even though I know what the experience is like firsthand, I still wanted to hear about it from other people.
Facebook being a global brand, my post was answered by people from Canada to India. I received about 100 responses, many of which were similar in nature—self-esteem issues, and a fear of talking openly about their illness. So, I decided that these were universal topics I could speak on. My proposal was accepted, and I in turn accepted a new personal challenge: to talk for 20 minutes in front of several hundred people about the disease I have lived with since birth.