When I was first diagnosed with Interstitial Cystitis, it was really difficult for me to explain to those around me what was wrong with me because honestly I didn't look sick. I didn't have stitches, I wasn't losing my hair, I wasn't in a wheelchair, but the truth was that I was sick. I just had the kind of disease that you couldn't see; the kind that was invisible, the kind that made everyone wonder if I really was sick.
Back then it use to anger me that people didn't accept that I couldn't do things like everyone else or didn't care to ask how I was. I was saddened that while all my friends were living "the best days" of their lives, I was off in a doctors somewhere, at home in bed or in an OR having surgery. I remembered feeling like no one cared, especially when friends stopped calling, I didn't get invited out to a party, but then I realized that my life had moved on from those people, that kind of lifestyle.
I mean I guess I can't blame them because looking at the picture above, I don't look sick right? Well looks can be deceiving because I am the face of Interstitial Cystitis, Lupus, Fibromyalgia and a few other conditions.
It was truly evident that God had given me a new kind of life that I was going have to adjust to. I had to stop having a pity party for myself and put my "armor" on. I came to understand that my life was going to change and that there was little I could do about it in terms of riding myself of the diseases that I had. I came to realize that wallowing in the idea of having a chronic illness wasn't going to get me anywhere except further in a place I didn't want to be. I try to stay as positive as I can and thank God every single day that I have the strength to keep going despite having the "But You Don't Look Sick" disease.
Basically the point of this blog is to share two important lessons things.
1. Realize that no matter how many times you've dealt with those around you that are ignorant to your struggle and refuse to understand your illness, you don't need anyone to validate or tell you that you're sick because that is your struggle, not theirs. You also have to remember that everyone is human and sometimes the only way someone can truly feel what you're going through is to be in your shoes. So try not to hold a grudge and get your support from where you can find it.
2. You can remind yourself that you have overcame a huge struggle because it takes a survivor to not "not looks sick." But another reminder is that you don't have to let your illness define who you are as a person. You're not your disease, you may struggle with it on a daily basis, but you're the same person, just with a whole new perspective on life. This is something I had to teach myself and finally accept over the years. Because in the end I refuse to just become my disease...
I am going to share a link to an article that has become pretty popular in trying to explain a chronic illness to a friend or a family member. I think its pretty informative.
Hello lovely! Just wanted to say that your blog is great. You've done an awesome job! Can't wait to read through more of the articles and I'll be sure to send some recipes your way soon. You got the words just right. We are not our IC; it is not who we are. It is something that is with us, but it just can't become us, or we will lose track of everything else we are meant to be in this life. And I agree with what you say about support; stick to the ones who understand. Simple! We can never convince anymone or ever explain enough so that they will understand what we go through. It is a lonely journey ... but with many strong IC support friends to meet along the way. Sending lots of love your way! --Missy xx
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