It Is Difficult To Be Your Own Advocate When You Are So Ill

We all hear how important it is to be your own advocate. I think everyone with a chronic illness has heard how crucial it is to become an educated, informed patient who takes lists of questions/thoughts with them to doctors appointments and jots down notes while in the exam room. And while having a better understanding of your disease and feeling like you can stand up for yourself creates a lot of empowerment, it is often more difficult than it seems.

For someone who doesn’t live with a severe chronic illness like Crohn’s disease or ulcerative colitis, it may seem like there is absolutely no reason in the world why you shouldn’t be able to stand up for yourself at all times. To outsiders, they may wonder why sometimes you simply can’t articulate all that is going on with you.

The difficulties of trying to advocate when sick and weak

The reality is, when you are at your weakest, most vulnerable point, it is flat out hard to be your own advocate! I have never had issues standing up for myself, declining certain treatment options, or asking a million questions until I felt satisfied... except when I am in a bad place with my disease.

Not shockingly, when my physical body is going through difficult times, my emotional well being changes too. I don’t feel the strength I feel when I am not in this dire situation. I don’t have the energy to “fight” and while ideally, no one with IBD should ever have to fight to get the proper care they need, many of us do.

Support from others when battling Crohn's or UC

I believe I have said it before but I will say it again. I have no idea how anyone gets through Crohn’s disease or ulcerative colitis alone. Seriously. To all of you reading this who don’t have at least one person who can be your advocate when you’re so sick, I am in awe of you. I sincerely mean that.

I honestly don’t know where I would be if I didn’t have the support system I do. There have been so many times where I couldn’t speak for myself. For example, I woke up from my second major surgery without any pain medication being ordered.

The hospital staffs’ response in the recovery room was “we didn’t realize she would need any.” This surgery was an open abdominal surgery to give me a temporary ileostomy. How could I NOT need pain medication when I woke up??!! Anyway, I digress.

If my parents weren’t there yelling and screaming for someone to help me, given I couldn’t even open my mouth I was in so much pain, I would have suffered so much more.

Speaking up for better care

While we do have great physicians, nurses, and medical personnel in our corner, a lot of the times they fall short. While they try to have our best interest at heart, we have to remember we are not our doctors only patient or the only one in the emergency room in a terrible situation, desperate for relief.

A lot of the time, if we just wait to be cared for, it won’t happen. We need to speak up, ask for things and sometimes even demand it. However, sometimes, when you are truly truly sick, you just can’t do it

...and you should never feel bad about it.