I feel like IC has made me flaky in terms of keeping up with social outings. Just a couple of years ago, I was the kind of person who you could ask two months in advance to meet you for a cup of coffee at 4:00 pm on a Wednesday and I would be there on time and with no reminder. I RARELY cancelled on anyone, ever. Even if someone was mean to me or if I didn't think an event was too exciting I would still show up.
Now b/c of IC I don't have the luxury of always being able to keep plans I make in advance. I feel scared that people I know are judging me and I am scared that one day I am going to wake up and no one is going to want to be my friend anymore because I am now one of "those people" who always cancel. The difference between the IC me and "those people" is that I really WANT to keep my word. "Those people" cancel plans at the last minute only for you to find out that they passed up your party for a better offer. When I cancel on someone I am likely at home on the couch with a heating pad.
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| Don't Stop Believin' Your IC Pals |
It is very hard for me to explain to people how random of a disease IC is. I swear on all that is important to me in this world that some days I can do a tap dance and other days it takes all my might to get out of bed and do what is required of me. Some days I have lots of energy and other days I want to go to the ER b/c I am in so much pain.
It is really hard for an IC patient to figure out how she is gonna feel day in and day out because this disease is still so under researched and we still don't have all the answers that we need and neither do doctors. It is especially hard on me b/c I have no food triggers really. My IC is different than some, very triggered by stress and it also involves a lot of nerve pain. It's not like I can say let me avoid eating this orange and I will be fine today. It doesn't work like that for anyone and especially not for me. I can literally be fine one hour, happy and virtually pain free and the next hour be crying in pain.
I think it is also hard for people to understand why sometimes I seem TOTALLY normal. I have to push myself sometimes to have a social life as I am only in my late 20s. Now and then when I am feeling up to it I do treat myself to a night out drinking or dancing. People may see me there and think I am nuts to claim to have such a painful disease, but what people do not see is that it takes me two days to recover from the outing. I may wake up with a throbbing bladder and aching muscles because of the outing and have to be within arms length of a heating pad and a bathroom for the next 48 hours. I no longer have unlimited energy the way I did in college. I have to make choices. If I know I have a friend's birthday party on a Saturday, I know I need to rest Friday night because if I don't there will be a good chance I am going to be flaring and miss it.
When push comes to shove, when something is super important to a friend I would go in 12 level pain if I had to. I would never miss a wedding or graduation or any other event that big unless I was literally in the hospital and wasn't allowed out. I will always push through pain to be there for other people for the most important times.
I just want people to believe me that if I cancel on meeting them for an ice cream cone or a cocktail it is not because I don't like them or because I am mean or because I am truly flaky...it is b/c this condition is getting in my way and I am doing the best I can day in and day out to learn how to live better with it.
Some days I do worry about waking up with no friends b/c they don't want to tolerate my IC scheduling issues. But I try to stay strong and remember that the older I get it is more important to have a few good friends then a ton of fake friends. I know if someone truly cares about me they will always take my word and forgive me when my IC makes me a drag.
So if you have a friend who has IC or any similar condition, know that she wants to be as active as possible, it's just that sometimes she physically can't. Don't Stop Believin' (in her).
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2 comments:
Thanks for this post! It's important to remind people (and friends) that canceling is not always the choice that an ICer WANTS to make but HAS to make.
Thanks for this blog, from what you write I think I have a similar situation to you. I have had IC and vulvodynia ( for 7 years, I'm 26), and the recent onset of really random, often severe pelvic pain. I also don't necessarily fit the classic IC profile in that I can't really find ANY obvious or consistent food triggers, stress and hormones are definitely obvious, and it makes me feel better to know I'm not the only atypical IC-er out there. I also do my best to stay positive, and keeping life going as much as I can despite the pain. Really, great blog.
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