What's Wrong With You?

This month is a very special month for me, because it is includes Invisible Illness Awareness Week! The official week this year is Sept 28-Oct 4, and you can find more information and cool resources at their website.

Yesterday I started reading Sick And Tired: Empathy, Encouragement and Practical Help for Those Suffering from Chronic Health Problems. As you can imagine, it's written by someone who is in the same boat so many of us are, and she herself has several chronic (and invisible) illnesses. It's SUCH a comfort to read these words that seem to come directly from my brain, but to know that someone else has the same thoughts! Instead of waiting until Invisible Illness Week, I want to blog my way through this book, and in honor of this important week, speak to some issues that we as invisible illness sufferers face, and raise awareness!

Normally when someone is sick someone can simply ask "What's wrong with you?" and the answer is rather simple - a cold, sinus infection, mono...and the conversation ends there. But if you have several illnesses, add to it they are invisible without outward symptoms, how do you explain that? Do I start from the beginning and detail 23 years of misdiagnosis, tests, almost answers, and arrive at the long disease names? I have tried that all too many times and watched as eyes glossed over, realizing they were in for way more than they bargained for. So they are confused, I'm frustrated, and nothing was solved or answered. This is most definitely something I still struggle with, particularly as I meet new people. I want to tell them so they're aware of my limitations or why I do certain things a certain way, but do they really need/want to know every detail of my journey?

So if I don't need to tell the whole story (unless someone asks - of course I'm an open book with telling the whole story if you are wanting to hear it!), and I shouldn't rattle off a list of diseases no one has heard of - what do I say? I suppose it would suffice to have a "nutshell" answer, and one that ends in a positive light so that whoever I'm speaking to doesn't resort immediately to pity or think I'm devastated (at that moment) about the life I've been given.

Take away here: When you ask someone who is chronically ill what is wrong with them, and they look around confused and don't answer right away, don't assume they are making it up or just want attention. It's because they are having the inner monologue from above, unsure of where to begin and how much to tell. Some people are just curious and want to know for their own nosy selves and will be happy with a short answer. Some people are legitimately curious and want to know about you as a person and more about what comes with hanging out with you a lot....so having a "nutshell" answer allows the nosy to be satisfied, and leaves a door open for further questions from those who are genuine.

Hi, my name is Jordan. I have several conditions that affect my muscles and nerves, and I'm in pain/exhausted every second of the day, so I have to often rest when I don't want to, so I'm going to sit down now. Would you like to join me?