ibd perspectives from caretaker to patient

For our committed IBD Connect blog readers, you'll recognize this isn't written by our blog author, Emily. My name is Jaimee, I'm a board member for IBD Connect, and I am your guest author for the next two months! When I was 28 years old, I was diagnosed with Crohn's Disease. Throughout my journey, there have been two topics that fully and utterly define my relationship with my illness. The first, and perhaps the most life-changing, is what I'll be discussing in this post.

I grew up the second oldest of 4, with my younger sister (and baby of the family) being diagnosed with Crohn's Disease at the age of 4. Being nine years older, I was immediately thrown into a caretaker role. I felt protective as an older sister, and I spent most of my late teens and early 20's worried about what my sister's life had in store for her. Would she be able to partake in sports in high school, or would her fatigue be too much? Would she be able to live at college, or would it be too difficult with her dietary restrictions? Will she have trouble making friends? Will they judge her? Will she be happy?

I chose to go to college only an hour from home so that I had easy access to my sister if she needed me. She would often ask that I accompany her to procedures, and I never wanted to let her down by being too far away. I would drive from school and meet her and my mom at the hospital, and I would lay with her while she got her IV put in. I would watch them wheel back my young sister all alone, and I would sit in the waiting room with my mom as she cried. We would wait, time and time again, to hear the outcome of yet another surgery or colonoscopy.

While many caretakers understand the reeling thoughts we have about our loved ones with an illness that we cannot control, at the end of the day, it is not our bodies being affected. I know I speak for many when I say we wish we could take it from and instill it in us instead of them. That, I found, was one of the hardest parts of being a caretaker. You truly feel the impact of the illness, but the illness is not yours.

As my sister got older and her illness seemed to stabilize a bit, I felt more comfortable refocusing my efforts on my own life. I moved to New York City in 2015 after completing graduate school, and I could not have fallen more in love with a city. I loved the hustle and bustle and being in the heart of Manhattan. I immediately felt at home. I watched from afar as my sister went off to college and started her own journey to becoming a nurse. It finally felt like we, as a family, may have some years of peace in our tumultuous relationship with IBD.

Fast forward to 2018, shortly before my 29th birthday. As I was gearing up for summer, symptoms I knew all too well from my sister slowly started becoming my own. I chalked it up to IBS, to anxiety from work, to anything else I could think of. I told myself, “don't stress about it, it will go away. It will subside. Don't panic. Don't tell your friends. Don't tell your doctor. And most importantly, don't tell mom.”

This went on for a couple of months, and both the symptoms and fears began to intensify. I finally reached out to my doctor, and he referred me to a GI. At my first appointment, I explained my symptoms, to which I was asked “does anyone in your family have IBD?”. Not shockingly, he scheduled a colonoscopy immediately. Within 2 weeks, I had my very own Crohn's Disease diagnosis. I will never forget the phone call to my mom, outside of NYU Langone in NYC. “I have Crohn's.” She simply cried.

Here I was, in the happiest stage of my life, dealing with the illness I took care of for so long. The illness I wished I could take from my sister was mine.

Most people connected to IBD experience one or the other: caretaker or patient. It's not lost on me that I am in a very rare position; therefore, my goal with this post is to shed some light for both parties. Both sides are often misunderstood, so this is my attempt to explain either side of the coin.

To caretakers, from patients:

Our illness is all-consuming. We never stop thinking about it. It infiltrates every decision we make, every place we go, every plan we agree to. It, in itself, is utterly exhausting.

We don't always want to talk about it. Sometimes, hearing a caretaker say “I'm here if you want to talk” is all we need. We don't actually want to discuss it. This stems from a few different reasons, but my personal reasons are 1) I think about it all the time, I absolutely don't want to talk about it as well and 2) what's the point? My answer will likely be “I don't feel great, and I don't know why, and no, there is nothing you can do.”

This isn't about you (this one stings, but it's true). It is not our responsibility to make caretakers feel better, so please don't put that on us. If we aren't talking about how we're feeling, it is not a reflection of you (refer to bullets 1 and 2).

There is inherent guilt that comes with telling loved ones about our illness, especially caretakers. Hearing about the ways in which you have adjusted your life for us is not helpful.

To patients, from caretakers:

We feel helpless, and it is isolating. We cannot fix you, and that fact in itself is incredibly painful to face.

We worry about you more than we worry about ourselves. Most of our decisions we make are with you in mind, and sometimes we just need to know you recognize that. We want you to open up to us and share the good, the bad, and the ugly of your experience. Even if we can't fix it, we can be with you in that moment.

Living a life engulfed in an illness we don't have is incredibly confusing and scary. Your illness is ours too, even though we can't claim it. It's all we think about.

The hardest part of the transition from caretaker to patient, for me, is that many of these truths are in conflict with one another. It took me a while to realize: that is okay. Multiple things can be true at the same time. One doesn't negate the other; all feelings are valid and true.

My advice for anyone struggling in either of these roles is to discuss with a third party; do not rely on the caretaker or the patient to be the soundboard for your emotions. Both sides are fighting their own battle, enduring their own journey. We are a community figuring this out together, and there will be missteps. Be kind and gentle to each other, and know that we are all trying to support and empower one another through this life sentence.

-Jaimee Doucette