Thursday, September 27, 2012


As an IC sister posted today:  “It’s hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Never judge what you don't understand.”

While I agree with this, it also inspired me to write about my personal feelings and experiences when it comes to how we deal with having invisible disease(s).
I know those of us with IC and many other invisible diseases must deal with people every day that to us, just don’t seem to get it. Some never will and while it can be painful, sometimes we have to accept that certain people are not worth the emotional energy it would take to convince them we are sick and in pain, even though we look fine.

But, here’s my thinking on this. First, if someone tells me I look great when I feel lousy, I don’t take that as an insult or that they don’t get it. I choose to look at it as a compliment – WOW! I feel this lousy and someone thinks I look great! Whoo hooo! Thank you very much for the wonderful compliment and I smile and it makes my day! For me, when someone tells me I look great, I choose the positive path and take it as I believe it was intended and move on. I mean, I’d rather look good and feel lousy than look as lousy as I feel. That certainly wouldn’t be fun, now would it! 

Recently, I posted something on my personal Facebook page about IC and my brother’s sister-in-law not only posted a comment back to me about how much she appreciated learning about IC, but she went out of her way to find me at a recent family gathering to hug me and tell me again how great she thought it was that I shared that information and how glad she was to understand what I was dealing with! 

To me, this is an example of me thinking for years that no one ever asked how I was doing because they didn’t care, when in fact it was just a lack of information and communication. When I took the time to explain it, I reaped the rewards and love of taking the time to share my story and explain it better. 

So for me, the lesson is while we ask for understanding from others about our invisible disease, we must also put ourselves in the other person’s shoes and don’t assume they’re judging us. I believe strongly that it is up to us in the IC community to raise awareness (something we all often say is sorely lacking) and help others understand what we are going through. Those who aren’t interested aren’t worth your emotional energy! There are always going to be judgmental people in our lives regardless of our IC, so I feel we shouldn't waste the energy we need for ourselves on someone that doesn’t deserve it.

So, I say use these situations as teaching moments. Take the time to try to help others understand; you may just find one more person who you can add to your support system who will be someone you can count on in the future when you are having a hard time. 

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