Sep 21, 2013

Interstitial Cystitis Awareness Month - Don't Judge a Book by It's Cover (or a Person by Their Appearance)

In honor of Interstitial Cystitis Awareness Month (one of my many chronic illnesses), I wanted to share a comment I came across on FB that shows the depth of the pain and desperation this disease can create in sufferers. While I myself would never resort to ending my life over IC, there are many who feel that desperate, and many who have taken that step to end their pain. All the more reason why a cure is so very crucial. Here is what IC sufferer Tara had to say about her life with IC (click photo to enlarge):

Most women living with IC also suffer from other chronic illnesses such as endometriosis, adenomyosis, autoimmune conditions, thyroid dysfunction, etc. (I myself am dealing with all of these conditions). Just one of those illnesses is enough to bring a person to their knees. Add in all of them together and you have a recipe for immense suffering and struggle to get through each day.

We're not looking for sympathy. We're not trying to complain or be whiny. We just want understanding and compassion and to create awareness. We want to speak out so that others who are just starting on this difficult journey have somewhere to turn to for help.

You have no idea how much being understood makes a difference when you are dealing with chronic illness. I received a sweet message on FB from one of my friends not long ago who had a temporary injury and she wrote to tell me how hard it was to go about enjoying a weekend out with her family while in pain. She said you would never know by her photos how much she was suffering and it made her realize what I live with each day.

When someone "gets it" like that, rather than judging you, looking down on you, or thinking you're overexaggerating or being lazy...there are no words for how much it means.

This past weekend, my husband and I traveled to NYC to see our favorite band Blue October perform. Matt had called ahead about ADA seating and we were told to get to the door 30 minutes early and to tell the doorman that we needed an ADA seat.

When we arrived and approached the doorman, he looked me up and down, then gave me the, "But you don't look sick" stare. My fellow chronic illness sufferers know exactly which stare I'm talking about. He began to question me in front of the large crowd of people standing in line and my husband had to start listing off my illnesses in front of everyone to get him to finally believe us (somewhat). It was humiliating to say the least.

As we were led to the upstairs balcony, the doorman made it known that he was still suspicious of me by taking me all the way to the back of the upper floor and placing a chair down, saying, "Here. I'll have you sit back here." Kind of like, "If you think you're getting special treatment with this seat, think again. You're paying the price for it by getting a crappy view."

His suspicious glares continued throughout the night, along with questions from other guests as to why I had a chair and they didn't (along with stories like, "Oh well I just had back surgery," and "I have been walking with a cane the past week," as if my chair were undeserved).

So while a cure is of the utmost importance, awareness, understanding and compassion are just as vital. You don't know if that person you're judging is grasping that last straw of desperation and your snide look may be what finally puts them over the edge. Remember that what you see on the outside is not always indicative of what is going on on the inside (and be happy about that because if the pain and suffering that accompany these illnesses could manifest in outward appearances...well, it's not something you would ever want to have to look at).

The old adage is true when it comes to invisible illness. Don't judge a book by its cover. Don't judge a chronically ill person by their physical appearance. Your kindness and compassion could mean the difference between life or death for those who are teetering on the edge of giving up their fight.

Note: Many thanks to fellow IC sufferer Cher Tushiah for starting this conversation on Facebook and helping to create awareness!


CP said...

Brilliantly written, Blondie. You know I have suffered with this disease for over 30 years. Back in the 80's they had NO clue what IC was. I got accused of all sorts of things, including "she's doing this for attention". Who the HELL would want that kind of attention? It took 20 doctors or so to finally validate my illness after 33 years. Now finally at 47 years old, I have vindication...but no closer to a cure. Thank you for being willing to talk about your situation. It's the conversation that will lead to a cure. xoxox


Michelle Palmertree said...

Well written! Thank you so much for what you do to bring awareness to the "invisible diseases" that cause more than just pain and depression due to lack of understanding.

It is so weird that you bring up Blue October, who is my favorite band too because I started a new blog as a countdown to a show of theirs that I have gotten tickets for. Problem is, I am agoraphobic and have fibromyalgia, among other things.. but I am determined to finally beat agoraphobia and Blue October is the bait I am dangling in front of myself to do it.

I figure that there is no way I will miss seeing them live. This will also be my first concert ever. I am so excited, but scared to death as well and very much worried about things like seating because of my conditions. I am so sorry about your experience and it's exactly what I'm afraid of.

I am the one taking this leap and putting myself in this situation so no, I don't expect special treatment either, but I do want to enjoy what I am working so hard for. This will probably be the only concert I ever get the chance to go to, not that I care to see anyone else live. ;) Unless they roll back through here..

From what I understand, this show in Little Rock is going to be in a pretty small space over a restaurant and I don't know if there will even be seating, but I can't stand for very long either without the pain becoming unbearable. My doctor has agreed to give me a steroid shot, which I already tried just to make sure there were no bad reactions the day before the concert. And while I didn't have any bad side effects with it, what little relief from the pain I got, I didn't even realize I had gotten until the shot wore off and the pain was back full force again. At least now I know it did help some.

Right now, the only place I do go is my doctors office. Before that I hadn't left my house in close to three years. Even then, I was forced out because I was in so much pain for so long and eating ibuprophen like candy even though it didn't help. My depression got much worse and I started having panic attacks again so my mom and husband forced me out and after two months of doctors and specialists and x-rays and ruling out everything else, I was diagnosed with FM.

I love the honesty Justin has about his conditions and his own struggles and that he also brings awareness to the "but you look fine" illnesses and it's a major part of my connection to his songwriting. He has a great talent for somehow making sense of these crazy thoughts with song and he's in such a better place now. You can see it in his eyes and hear it in his voice. I am so happy for him and that and of course some of the songs on Sway have totally inspired me to fight to get my life back. Or at least the part that let's me out of my house. =)

I would love to talk to you about this more privately because it sounds like you know some things that I should know so that I will be better prepared to leave my house. Hope you can talk soon.. I only have 25 days left to overcome the agoraphobia to even make it to the show. I'll follow your link to Twitter and you can DM me when you have time?


Cameron Von St James said...

Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

Paulo Gonçalves said...

Nice blog!
Paulo Gonçalves

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