Please...Just Hear Me Out

I am a very open person. If you want to know something about me, just ask. I’ll tell you most anything about me, warts and all. That said, I’ve mentioned my struggles with IBS to just about anyone I trust even a little bit. I’m lucky to work in a social work environment that encourages sharing life experience, so my co-workers are at the very least aware that I suffer with a disorder of the stomach. Of course, my Mother knows. She doesn’t get it. She stands among the multitudes that believe that IBS is simply having ‘bathroom trouble’. Well, when I was in a ‘mood’ the other night, I gave her the long and short (mostly the long) about IBS and my experience with it. What I said surprised me. I knew that there was a lot involved with the disorder, but wasn’t consciously aware of just how much. I mentioned that she stands among the ‘multitudes’ of people who don’t understand. I meant that literally. I believe that the majority of people who have heard of IBS think that it’s just going to the bathroom too much or too little, if they are slightly more educated about the whole thing. I’d like to share the basics of what I said to my Mother, because it’s what I wish that everyone knew about IBS. I believe this to be important because IBS is a terrible, debilitating thing and people who have it not only need validation, but also support.

No stone left unturned

IBS affects your entire life. People with IBS can get very sick and remain sick for very long periods of time. The management of IBS requires a change in diet that is tremendously difficult, restrictive and rigorous. We (folks with IBS) cannot have many of the things that people indulge in to help them relax or feel better after a long day or work week. Most desserts are out. Fried food…no. Eating out is a b****. No alcohol, coffee, caffeine or pain medication that can inflame the stomach. The medication that is often prescribed can make you very uncomfortable. If you slip with the diet alone, you can experience a flare up that can put you down like a tranquilized lion. You can feel so strong for a moment and then lose your self-confidence and sense of self-worth because you feel as if you have no control over when you might get sick again. For my type of IBS, I need to know where all the bathrooms and exits are, every time I leave the house. Everything I just said is just the beginning. Shall I go on?

IBS affects your mental health as well as the physical. Having to maintain a strict lifestyle in order to TRY to keep yourself from getting sick can be very stressful. Getting sick and either not being able to go to the bathroom or needing to go all the time is painful and takes a hammer to your self-esteem. We often need to seek therapy, psychological meds and support groups to manage the anxiety and depression that can inevitably occur after long periods of stress. Now, this is all just a part of what people with IBS deal with and we have to deal with it while our lives go on around us. We still have bills to pay, jobs to keep, a desire for a relationship with a partner, friends and family. We also have to cope with the bad things that life brings from time to time while suffering with IBS. We may be weakened by the illness and unable to cope. IBS AFFECTS THE WHOLE OF THE LIFE OF THOSE WHO SUFFER WITH THE DISORDER.

Empathy, not sympathy

NOW, that was all pretty depressing. I spend most of my time trying to keep a positive attitude and manage my IBS to very best of my ability. I’m sure most of you do too. As with any illness, there are wins and losses, good days and bad. My explanation of what we go through was just an example of what I wish people knew about IBS, not because I want people’s sympathy, but because I want people to understand a bit better and be able to empathize. There is a difference between empathy and sympathy. If people could walk a distance in our shoes, then perhaps we wouldn’t just be those people with ‘bathroom trouble’. Thanks for listening.