“Don’t Let Your Struggle Become Your Identity.”

This particular blog entry is hard for me to write.  I am obviously open to writing about myself and the things going on, in my life, but I’m not sure where to begin.  This one feels almost too personal.   I’m going to do it anyway, enough is enough, there is no real graceful way to start, so here goes.  I am what a person with an invisible illness looks like.   I was diagnosed with Ulcerative Colitis, an auto immune disease, 6 years ago at the age of 30.   Several people around me, still to this day, don’t even know I have UC, like I said it’s invisible and difficult to bring up in conversation, at a dinner party.

I know the majority of you are thinking, what is Ulcerative Colitis?  Most people have no clue what UC is, (I know I didn’t when I was diagnosed) so I guess I should enlighten you.  I will just convey a quick overview and if you are interested in ascertaining more, Google it.  Ulcerative Colitis is a form of Irritable Bowel Disease (IBD) that affects the large intestine.  It is commonly confused with Irritable Bowel Syndrome (IBS) a much less serious condition.  Colitis is part of the Crohn’s family, which is more commonly understood, both Crohn’s and Colitis have similar characteristics.   Here comes the gross part.   Ulcerative Colitis presents symptoms of diarrhea, cramping pain, blood and mucus, in addition for me; it affects frequency, urgency, control and consistency (Fun, right?).  UC can go into remission for extended periods of time or present itself in flares on a regular basis.  There is no real rhyme or reason at all, as to what causes a flare, which makes this disease exceedingly stressful. Foods do not cause flare ups but controlling diet can help when symptoms occur.  Oh, and there is no cure, so most likely I will deal with this the rest of my life.  I promise I’m getting to the inspiring and positive part.  It sounds so uplifting so far, doesn’t it?

I read this great quote a long time ago and it has always stuck with me, “Don’t Let Your Struggle Become Your Identity.”  I couldn’t find out whose quote this was but I agree with it wholeheartedly.  It’s real easy to get into the why me slump.  Who doesn’t at some point in time?  We always think we’ve got it so bad when in fact someone else, somewhere else has it so much worse than you do.  I’m not perfect and I do let myself go to the why me place but I try my best to only make a quick stop.  After I get done feeling sorry for myself, and I do, I normally step back and tell myself, I will make it through this.  I have been diagnosed with a disease not a death sentence; it’s my cross to bear.  I also do my best to put it in perspective and realize in the past, I have endured unimaginable pain and embarrassment and lived to tell about it.  I get stronger and more knowledgeable with each flare up, that’s got to count for something.  I am however determined to not let my struggle become who I am!  It is merely a part of me, just like where I live or what I like to do but it does not make me who I am.  So no matter what the future holds for me, I am determined to keep fighting my own personal battle with UC and have hope that one day I won’t have to know where every bathroom is.

I would never claim to be an expert on UC, but I did stay at a Holiday Inn Express once.  All kidding aside, I have stood around and listened to people feel sorry for me, misunderstand the disease and try to tell me what they believe is the cure, everyone’s got a diet that will cure it.  I know people are trying to genuinely help but for the most part I have read it all and tried many different things, everyone is different and in fact there is no magic pill or diet.  It’s a daily challenge that each person affected by this illness has to understand for themselves.  What I would like to tell people is, just be there for me when I call on you and need you.  Understand that sometimes I can be perfectly fine one minute and balled up in the fetal position, on the toilet the next.  Know that I could be very sick even though I look fine. Don’t tell me, that you know what I’m going through, because the 24 hour flu you experienced isn’t the same.  Also know that weight gain is a factor for me when I take steroids, just know it’s not fun and I don’t need to know, how good or bad I look.  Overall, I just want to be treated normally.  Please don’t worry about the foods I eat, don’t make me try something I don’t want or don’t tell me that my problem will go away if I eat better.  Most importantly, NEVER ask me to wait to go to the bathroom, pull the car over or help me find the closest bathroom NOW, if there isn’t a bathroom nearby help me come up with a way to improvise but NEVER ask me to wait. 

Why am I writing this now, after 6 years?   I’m writing this to bring more awareness to UC and to let others with their own crosses to bear know that it’s ok to talk about it.  If I can talk about my bowels, nothing is off limits, in my mind. Bringing your problem into the light is the only way to make others truly understand.  I’m also writing about it right now, because honestly it’s on my mind.  I’ve made several trips to the bathroom, just while writing this blog as I am in the middle of a flare up.   After months of jumping through hoops and getting on the proper medication, I believe I’m starting to feel better.  It’s early in my recuperating, but I remain optimistic, it’s all I can do.  I will tell you that I’m not letting up or stopping my usual routine, I just keep pushing through.  A good example of my determination to press on and be normal materialized the other day when I was playing in my softball league.  I didn’t imagine I would be able to make it through this particular game, I was experiencing a lot of pain caused by my flare up and I started to panic because there wasn’t a bathroom in sight.  I improvised; I had to take my wipes to a wooded area (it’s in a city, so you can imagine it was no forest and not ideal).  This type of thing is not for everyone and I understand but after you have messed your pants, in public, you learn to be creative and do what’s necessary to make it though.   Point being, I can make it through any circumstance and so can you.  I refuse to lock myself up in my house and sulk; I just wear my flare up on my sleeve and get on with things. I played the whole softball game thinking I could do it, prayed I would get through it and I did.   Positivity really does go a long way. 

The biggest thing I have learned over the last 6 years and would tell anyone suffering through this silent illness is to talk about it.  Stop the silence, how can people know about what we are going through, if we keep quiet about it.  Make people around you understand and don’t down play it.  I know…I know no one wants to talk about poop but it’s a fact of life and everybody’s doing it.   People who matter in your life will try to understand your struggle and if someone is bothered by it, shame on them for being so insensitive.  My hope for the future is that my disease will come out of the dark and finally be discussed just like all the others.  The more people talk about it the more of a chance that one day there will be a cure.  No matter what your struggle is in life, know that it’s not as bad as it seems, in the moment.  Take a deep breath, talk about it with those around you and know that you will get through it.  It’s only a small part of you, don’t give it more power than it deserves and don’t let it become who you are.  Never give up.  It’s like they always say, you don’t know what someone is going through until you walk in their shoes.  So remember to be sensitive to others, just because you can’t see it, doesn’t mean it’s not there.