By: Isabela Hernandez
I’ve often wondered the effects of how open I’ve been about my disease, through these articles, on the mental coping of my disease. It has gotten me to look back on my journey and the strides I’ve taken when sharing the mental and physical fatigue I deal with. I used to be very closed off when it came to all things IBD. I would tell the people around me that I have “stomach issues,” and that’s it. As I entered into my advocacy journey, I started letting the people around me in; giving them the information I withheld for so long about a part of myself I repressed from the outside world. I truly believe that through this, I have been able to mentally process my disease better. So, this is where I wonder: does being more open with your disease mean better outcomes? Or alternatively, does being private about your disease mean you are able to maintain sanctity within the crazy experience that is having a chronic disease?
It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes.
As I spoke with another 2022 fellow, Carina Diaz, about this, and she expressed, “It’s exhausting to continuously have to educate people closer to me on IBD, especially family. I’ll either point them to resources so they can do their own research [like content made by fellows] or tell them that I’m not talking about my health at the moment,” which is something I feel and relate to daily. Even though I am open to those around me about my IBD, they still sometimes look at me with eyes of confusion, never fully grasping what I tell them. It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes. So, this somehow supports the argument that being private about certain parts of your IBD can actually save you from the exhaustion that comes from having to share very personal parts about yourself.
I encourage every IBD patient to find a community of patients your age to talk to.
However, Carina also mentioned, “It’s comforting to know I’m not the only young person who sees their doctors more than their friends.” I have come to the conclusion that there are two ways that I find best when being open about your disease. I believe being completely transparent, and not holding back, with other individuals who suffer with IBD through peer support absolutely shifts the way you will view your disease, while being open but maintaining healthy boundaries with friends and family will help them grow in their understanding of your disease while allowing you to maintain autonomy within your space as a patient. Having peer support through the IBD community is one of the best things that has ever happened to me and something I am eternally grateful that I found. I encourage every IBD patient to find a community of patients your age to talk to, hang out with, or even just meet virtually and challenge yourself to share parts of your journey you have been too embarrassed or scared to share. I used to think that certain parts of my life were too much or too humiliating to share to others and that they were these huge parts of my life that could never be lived down. However, I’ve found that once you share them, you realize they’re actually not that big, and they become just small, formative parts of the journey as a person. It is even more comforting to share them with people who you know, in some way, will understand.
This article is sponsored by Trellus
Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.