"Suffering the Slings and Arrows of Outrageous Fortune"


When you live with a rare disease, it is easy feel like you are utterly alone in a very small boat adrift on a very big ocean. It is an overwhelming, terrifying feeling.

EDS is considered a rare disease (I personally doubt it is quite as rare as the official stats say right now, but that is another discussion!) and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey.

That is where a day like Rare Disease Day comes in. The theme this year is ‘Rare Disorders without Borders’ and it is a reminder that, even if you are one of only a few in a given place suffering from a disorder, there are many, many more just like you around the world. You are not alone and there is strength in numbers.

You may indeed be adrift on a big, scary ocean, but if you glance around, you will notice other boats drifting along with you, their occupants oddly familiar. You can get close enough to them to ask questions, to compare notes, to ask for help. Suddenly, you realize that there is hope.

There was a time, when patients were on their own to try to figure out how to live with EDS or other rare diseases. Today we are so incredibly fortunate to have the ability to converse easily with anyone, anytime, around the world about medical conditions, treatments and issues – it is a far cry from the days of newsletters and searching in reference books at the library.

Being connected with others like yourself is pretty easy these days: from your bed or your couch, you can be in contact with hundreds of others who are going through the same difficulties as you. There are online support groups for any condition you can think of. You can discuss treatment options with others who have personal experience, rant about the trials and tribulations you have in common and have a built-in cheering section to rejoice with you when you experience the all too rare victories. In a word, it gives you hope.

I think, of all of the helpful things one finds on the journey of living with a rare disease, the most important is hope. Without hope, we really are floating aimlessly, hopelessly alone in that boat. But, hope, even a small, faint hope, makes all the difference.

Happy Rare Disease Day!



Comments on: "Rare Disease Day 2013" (3)

  1. I’m in a couple clubs here at my college, and today, one of those clubs is meeting. And we’re having a karate instructor in to teach us some basics of self-defense.

    Well, most of my self-defense strategy relies on the canister of pepper spray and the various pointy objects (who knew knitting could be so dangerous?) concealed within my purse, along with the panic adrenaline that would hit if I were in a dangerous situation, because if I tried to practice self-defense, I’d be too weak and exhausted to actually use it.

    But on the bright side, this means that I’ll be explaining why I can’t participate, and today is the perfect day for it.

    • I think you are right about this being the perfect day to explain! I was going to say that you could sit in so you could listen and learn, but, I know for some people just that could set off a fight or flight reaction that could leave them exhausted for hours!

      Years ago, Em took a self defense class at our homeschool co-op, about the time when she first started having joint problems but well before we knew about EDS, and she hated it. For some reason, she kept getting hurt – spraining her wrists, wrenching her thumbs, yanking her shoulders out of place… Sigh, something that should have made her safe, hurt her! Of course, now we know what the problem was and it all makes sense!

      It would be interesting to see if the karate instructor could modify any of the techniques so they would be safer for your joints…

      Keep your pepper spray handy and stay safe!

      • I’m still going to sit in and watch, because I have yet to miss one of the meetings and I don’t want to start today (plus there’s a really awesome person in that club that I kinda maybe have a crush on…) but I know that trying to actually practice any of the techniques would give me issues unless they have self-defense techniques that involve lying on the ground and kicking, or something to that extent. Even just standing for maybe half the meeting would leave me crying.

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