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The Importance of Finding Your Tribe

At school, I wanted to belong to the “cool crowd.” I used to watch them from the outside and was so jealous of the way they seemed to glide around school, owning every little aspect of it. We all wanted to be in their little clique because they were the…

Being a Patient Is Hard Work

It takes serious work to be a patient, regardless of the disease you have. The lay person’s portrayal of chronic illness and the subsequent clinical perceptions of patients leave a lot to be desired in their inadequate awareness, and, at times, acceptance of our reality. These impressions barely scratch the…

The Value of the Good Doctor

The first thing I was forced to learn very quickly after falling ill is that doctors are only human. It does not matter if they are specialists, general practitioners, or retired; human nature is bound to catch up with them at some stage. As we all know, human nature is…

The Cost of Uneducated Care

During my most critical year with myasthenia gravis, I spent an inordinate amount of time in the emergency room and on various hospital floors. A good deal of the ER staff soon got to know me by name and, while clueless as to how to help my rare but potentially deadly…

Make Yourself Priority No. 1

When I was diagnosed in 2004, it was a shock to my entire family. We had never heard of this disease and had no idea what it meant for my future. I had to take a year off school due to hospitalizations, treatments, and a thymectomy. I felt like…

You Can Be Happy for Others While Still Mourning

Recently, I was chatting with some of the other ladies in my support group who have been on a similar path as me — constant hospitalizations and relapses. They have also been through the heartbreak of having yet another treatment not work and the uncertainty of their future, health-wise. We…

The Guilt of Being Ill

Guilt is a well-acquainted friend for anyone living with myasthenia gravis. Poor health often means that our participation is limited, our range of executable activities are restricted, and our energy levels sometimes feel non-existent. This does not only affect us but also those closest to us, and that is where the…