Rare yet all the same

Eleven years ago, I was thrust into the world of medicine as a patient in dire need of finding a diagnosis. My body was failing. No one knew what was wrong with me. I felt as though I was a social outcast. Unable to do more than lift my head off the pillow, no one seemed to understand my daily life.

As the internet began to evolve with message boards and Yahoo groups, I suddenly found myself surrounded by dozens and dozens of folks going through the same medical, physical and emotional challenges. Although our diagnoses were often not the same, our stories were. We were all chronically sick. We were all desperately seeking answers to our myriad of symptoms. We all just wanted to get back to our regularly scheduled lives.

As time progressed, we shared our stories of frustration when medical professionals did not take us seriously. We expressed our sorrows when medical procedures went poorly, or one of our beloved passed away. We inspired each other when loneliness and isolation often threatened to overwhelm us. We celebrated birthdays and milestones which were often forgotten by our own families.

Yes, it is through rare conditions we learned to grow. We learned to deal with our inability to function normally in society. We developed relationships with people we never met. Our hearts grew to comfort and console our virtue family.

As February 29--rare disease day--comes to pass, may we all take a moment to reflect on how far we have come. With each day, medical research continues to advance. New procedures and devices make it possible for us to live in the comforts of our own homes. May we rejoice in online communities which allows us to share our stories and knowledge. Although none of our paths are exactly the same, may we raise each other up to continue the fight.

To all my friends with rare medical conditions, keep on keeping on. This life may not be easy, but it is a blessing to have each one of you in my life. Praying one day there is a cure to all our ailments.