"Suffering the Slings and Arrows of Outrageous Fortune"


It is February 28th and that means it is Rare Disease Day again. This is the eighth year for this global recognition of living with rare disease and my 4th blog post about it. Honestly, there is something about writing about this topic again, that is somehow a little discouraging.

But, that is our reality and what life with a rare disease is like. Ehlers Danlos is not something that my family will ever get over. It will always be with us. Even when it is out of sight, it is always lurking – an unwelcome stalker in our lives. There will never be a time when EDS is not part of our lives. So, yeah, that thought is a little discouraging, to say the least.

Which, I suppose, is the entire purpose of having a day to shine a light on the hidden population of people living with conditions largely unknown to both the general public and even many doctors. The slogan this year is Day-by-Day, Hand-in-Hand which I think is particularly apt. It really is the secret to successfully managing life with a rare disease (or two or three).

The only way to manage the reality of living with rare, chronic, invisible illness, is to take it day-by-day: one day at a time, one step at a time. If you fix your eyes on the horizon, way down the road you are traveling, it is overwhelming. It seems like an utterly unmanageable task when you look too far ahead. But, if you focus just on today, on the here and now and can  take the journey day-by-day, it is manageable.

And, although the journey is a lonely one, it is comforting to know that we are not alone. There are thousands (if not millions) of people living with EDS alone, and millions more living with the thousands of rare diseases. ‘Rare’ does not need to mean alone and, although the conditions we may be living with may be exotic or uncommon, when one can see the millions of people who share the designation of ‘rare’ it becomes obvious that we are part of a huge family that reaches across the globe. We all walk hand-in-hand on this journey we are on and that knowledge makes the journey a little more bearable.

I, personally, count it a privilege to be part of this worldwide community and to have met the amazing people I have met on this journey. The best things in this world come down to relationships and it is our relationships with others like us that lead to a better quality of life – to thriving instead of just surviving. They lead to better treatment and more understanding.

It is not easy, being a zebra in a world of horses but being part of a herd of zebras does lighten the load and I am thankful for all of you!



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