I don't know how you do it...

This blog post served as an inspiration and rallying call for me on what's been a tough morning in a series of tough mornings.

The IDF Conference tends to make me quite introspective and thoughtful about my (this is the first time I've actually typed these words and I just might cry) disability. Yes, it's a disability. Yes, it's difficult. It can be overwhelming and lonely, but I try my best to not let either thing get me down.

It IS a lonely disorder, because even at a conference full of people who have problems like yours, no one's problems are the same. Some are better, some are worse. While people are around that "speak your language," it's hard because you're still the only one fluent in "you." I know that is a difficult thing for most people to understand, and it's a difficult thing to explain. There's a desolation in knowing that you're the only one.

A dear friend has a colon issue and has yet to find anyone in the world with the same dysfunction. Expert physicians have heard of it, but no one can say they've actually seen a patient with the problem. That is lonely. Not a single person. This is not just presentation, this is entire disease diagnosis that she can't find anyone to share with. That's even more lonely.

But what does all this mean for daily living?

With rare orphan diseases, people are often sympathetic to what you're going through. I often hear "Well, I shouldn't be complaining to YOU about xyz illness thing I have going on. You have enough stuff to deal with." I do, but it's nice to know that other people get sick too. Granted, it's on a whole different scale, but sometimes it's nice to know that other people feel like crap.

I like to know that my experiences can help someone else, so I am happy to offer advice on OTC cold medication or explain the possible side effects of antibiotics. It makes me feel more like a whole person and makes my experience a lot less lonely. I may never get the sense that I feel normal or like everyone else, but, then again, who feels that way?

I am happier now than I've ever been, even with the struggles and challenges of illness. It's not easy, but there is a lot to be said for getting through. I do it because I still can, gosh darn it. I keep putting one foot in front of the other because it feels good to have a victory, however small it might be.