Tuesday, March 29, 2011

Some Things You Should Know Before Judging an IC Patient

People with invisible illnesses take a lot of "you know what" from others. Totally healthy people can not understand how hurtful it is to hear whispers that you are not really sick. Having IC is not fun by any means and is not something anyone would choose to have or make up having. The lack of IC awareness combined with ICs invisibility factor makes IC patients a target for catty naysayers. 

Before you judge someone with IC or make that comment you are dying to say, here are a few things that you should know:

-Most IC patients look fine on the outside. Please get over it. If we need to leave the house we may choose to put on a stylish shirt and make up. We are not going to go out in public in ratty pajama pants all the time just because our bladders are sick.

-IC patients continue to live life, because we have to. We are not dying, we are just in pain. The pain has no cure, but it also can not kill us so we NEED to find a way to go on. Just because we get out of bed and live life doesn't mean we are cured. We have no choice but to be as "normal" as possible.

-You don't see us behind closed doors. Likely, unless you are a best friend or family member you only see us at our best. We pull ourselves together sometimes to go to a birthday party or to attend a book club meeting because we are lonely and we want to support the people in our lives. But you don't see us the hour before we leave the house or the hour after we get home.  It may take everything we have just to leave the house for two or three hours. Our bodies may punish us for an entire day just for going to an event for two hours.

-We don't like to be told what to eat or drink. If you actually know something about IC, you probably know that we are supposed to avoid acid ridden food and drinks such as tomato sauce or coffee. What you may not know is that IC effects everyone differently. Just because one IC patient can't eat pizza that doesn't mean that there aren't other IC patients who can. What else non IC-ers fail to realize is that there is a little magic over the counter item called Prelief. It is a powder that can be added to food to reduce the acid level. Many IC  patients use this to be able to eat more things. Thirdly, sometimes we just cheat and we pay for it the next day. Just like you may be on a diet and give in and have that extra piece of cake we may know something might hurt our bladder and give in and eat it anyway because we are simply sick of IC friendly food.

-If you think a UTI is the same thing as IC, please don't go around giving advice. IC is way worse than having a UTI because it has no cure. It is also harmful to go around giving IC tips to people if you are not educated. I can't count the number of times an annoying person has tried to shove a glass of cranberry juice in my face because they believe it will help my bladder problem. Cranberry juice is optimal for UTIs but very harmful for many IC patients.

-We can smile while in pain. We are actually really good at it. If we can keep our pain below a certain level, we can fake being comfortable. We do it for the good of the people we love, not to have you whispering that we are too happy looking to really be sick. 

-Once in a while, we are snippy. You would be too if your bladder was on fire, trust me.

-Please, never ask an IC patient when they are going to get better. We don't know. There is no cure, only good days and bad days. For some reason people can understand that diabetes has no cure, but the same people can't understand that IC has no cure.

-Give us a break if we need to cancel plans. If you have a friend with IC, go easy on them if they need to break a dinner date planned three weeks in advance. An IC patient can feel fine all week and then wake up in 10 pain and need to be curled up in a ball all day unable to move. 

Sorry for the bluntness, but people need to know that IC patients deal with a lot. It's not our fault that we look so attractive while doing it. One good thing about IC is that it teaches us not to judge people based on outward appearance alone. Don't wait to be diagnosed with an invisible illness to learn this lesson. Love more and judge less now.

6 comments:

Rubens Beef said...

This is SUCH a fantastic blog entry! I agree with all of this 100%. I wish that people who didn't have IC wouldn't be so quick to judge people that do. Just because "I don't look sick" it doesn't mean that I am not completely miserable that day and just have learned over the years how to put on a happy face.

The Valcat said...

Thanks Sarah and thank you for commenting. I go through the same thing often. I am so happy so many of us can connect online so we don't feel alone.

Anonymous said...

This is so true. I sent it to my dad and friends so they can try to get an understanding of what I am going through. It helps that someone else wrote and described it.

Allison Jacobs said...

Valerie, thank you for writing this! Whenever I come across something that totally expresses how I feel & what I go through, I am so thankful there are others who I understand. While I sincerely wish we didn't have to endure all this pain & suffering, somehow knowing I'm not alone helps me through it.

Samantha said...

This blog hits home OH SO WELL! It seems to have been the PERFECT post for me to read currently. I am in a horrible flare and was in need of connection with someone who understands. I occasionally stop by your blog to see what you've recently written. Thanks for helping get the word out about IC!

The Valcat said...

You're welcome ladies. Thanks so much for reading. I love connecting with others. The world of IC and pelvic pain can be scary to face alone.

 
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