One of the most frustrating things as an IC Warrior is that people often don’t believe we are in so much pain because we look OK. People tend to search for physical signs of Interstitial Cystitis (IC) but there are none. Our limbs are not falling off. Our hair is not falling out (well, unless we have some horrible side effects from medications like Elmiron). But, overall, we look healthy. In fact, most of us tend to even wear a smile on our face to get us through the day. Hence, people are not even inclined to suspect that we might not be OK. People don’t even ask the topical Richard Branson question of ‘RU OK?’.

Even if the question is asked, the answer is often lost is translation. Whether it is that people don’t listen, we don’t explain ourselves correctly, or the concept of severe bladder pain just cannot be comprehended, we are misunderstood. Additionally, most IC Warriors are Type A personalities, always striving for perfection, so it is often hard for us to admit to the world that we are not OK. In fact, we don’t even like admitting to ourselves that we are not OK! Moreover, during an IC flare, we just don’t even want to talk. We don’t want to engage in any conversation. We don’t want to explain ourselves. We just want to focus on surviving.

This obviously poses a lot of problems for us so I ask that you please remember the following: if we are not at work today that means we are not OK; if we can’t come to your wedding that means we are not OK; if we bale, yet again, on your dinner plans that means we are not OK; if we stay at home while everyone else goes on vacation that means we are not OK. What this really means is that the burning pain in our bladder is so bad, or the fear of being away from a toilet is so great, that we cannot possibly venture out into the world.

In addition to remembering these things, I ask that you please send this post to an IC Warrior today and ask them ‘RU REALLY OK?‘. Pick up the phone and call them. Better still, ask them in person ‘RU REALLY OK?’ But as I mentioned above, we may not be able to verbalize our pain to you, and you definitely won’t see any physical signs, so look into our eyes. The sheer pain emanating from our bladder will be starring you straight in the face.

Fiona McKiernan, MS, RD

IC Warrior

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Auteur: Fiona McKiernan
My name is Fiona McKiernan and on September 1st, 2015 I proclaimed to the world that I am an “IC Warrior”.
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4 jaren geleden

Thank you