How Being a Patient Has Changed Me

I beg you… to have patience with

everything unresolved in your heart

and try to love the questions themselves as

if they were locked rooms

or books written in a very foreign language.

..sabrina ward harrison..

There are so many ways in which the life I’m living today is different than the one I was living before I began living with Crohn’s disease. There are an infinite number of ways that being a patient has changed me.

The little things

There are the little things. The way in which my purse is always heavier than yours because I’m carrying countless extras. Medications and charmin to go, wet wipes and extra underwear, sea-bands, deodorant, water bottles and ensure and snacks. Then there’s the sheer fact that the very first thing I do in any new place is locate the restroom and a place to sit down. I recently wrote about the ways in which my conversations have opened and, my story has become public. I have also realized that taboo is something we create, and that the more we talk about what we’re experiencing, the more others don’t have to live in fear or alone.

Every action, every movement, every everything I do must be planned out as best as it can be. Because the energy I have to exert is merely a fraction of what it once was. Showers cannot be taken every day, because often that means sacrificing energy for meal prep or household chores. Errands must take place one or two at a time instead of knocking out a whole list at once. Driving must be weighed each time I get behind the wheel. Do I have enough strength to get where I need to go, do what I have planned, and return home?

The bigger things

But then there are the bigger things. The things that in truth, I’ll be forever grateful for. Being a patient has changed my level of compassion, of empathy, of understanding. It has changed my drive to reach out, to send messages to strangers, to share intimate details of my life with people I may not have otherwise (re)connected with. It has allowed me to understand the strength and struggles of anyone facing anything; and in truth, that’s not something I have always been able to do. It has connected me to some incredible individuals, friends that have become family that I would not have otherwise known.

And the biggest thing

Perhaps the biggest way being a patient has changed me is the one I will carry with me, the one I have built my career out of. It’s being an advocate. In doctors offices, in hospital rooms, under sedation or medication or emotion, and even out in the world, the most important thing we can do for ourselves is to have an advocate, or to become an advocate. We know our body better than anyone else. We know our conditions and the ways in which they interact and change parts or all of who we are better than anyone else. Because we are not observing it from the outside, we are living in the midst of it. Our doctors, our surgeons, our therapists – they can help us best when we convey to them what we most need, how our diseases have changed our lives, the things we are willing to compromise around and those which are making it unbearable to continue on. We know when we are truly in trouble, versus when we can handle the challenges on our own with the tools we’ve already been given.

My own advocate

Being our own advocates allows our families, our friends, our teachers, our bosses, our colleagues to understand us and our lives better – if and when they want to and are ready to. And that too is something we must understand. Something that has taken me all these years to realize. We have adapted because we’ve had to. We have become patients and advocates and vocal about our bodies and our struggles because it IS our lives. But it’s not everyone else’s. And they may need time to come to terms with watching our lives change, with what this means for us, and for our relationship with them. We must respect those boundaries, and share what they are ready and willing to hear when they are ready and willing to do so.

We get the chance to use our voices. To explain what we’re experiencing. To describe the things we miss. The things we’ve gotten used to. The things we’d change in a heartbeat if we had any of the right resources. We get the chance to strengthen ourselves by owning our own stories. By having patience with the things unresolved in our hearts. By showing the world that we are growing, that we are changing, that we are surviving. Often times that looks like one step forward and two steps back. Canceled plans or casual outfits without makeup.

Sometimes it looks like any other conversation, one heart to another.

Ultimately, I'm grateful

Being a patient has changed nearly everything about me. But I’m so grateful and lucky to also remember who I used to be. I’ve had the chance to realize that the pieces of my heart, the things which ruminate in my soul - they are still very, very much present. And for that lesson, for realizing that when everything, everything in my world has changed, I’ve been able to hold on tight to a few parts of who I used to be – well, it’s the most profound lesson of my life.