The Jewish New Year just past and since my family is technically Jewish, it made me think about my family and friends who celebrate the holidays and just celebrations in general. And then my mind forced me to take a look back at all those family events and special occasions I couldn’t be at because I was either too sick or completely unable to really put on that super happy face in front of the people who I know love me and care so deeply for me. I feel like I have been in a constant state of crisis then recovery, crisis then recovery, nonstop, that it has left me with no time to actually take a deep breath and enjoy certain things. There were so many times where my parents planned a vacation or a day we were all supposed to spend together when suddenly, out of nowhere, I got sick and our plans had to be changed. When this started happening so frequently, it was as if my parents (especially my mom) were afraid to actually make plans and commit to anything. They didn’t want to feel the disappointment themselves, but more so, they didn’t want it to hurt me that something my brother and I had been looking forward to for so long could no longer happen because of me. They never wanted to put anymore guilt on me than I already feel internally, so it has been easier to just not make plans and not commit to certain dates and family events. One day at a time is how I am trying to live, and since IBD comes with so much unpredictability, it is always so difficult to know how you are going to feel when you wake up in the morning.
The unpredictability and uncertainty that comes along with having Crohns disease or ulcerative colitis brings about many feelings of frustration, anger, resentment, and isolation. I would never allow anyone to come visit me in the hospital besides my parents. I was always just so sick, so weak, and since everything I was going through was related to the bathroom, it was too embarrassing for me to allow myself to be seen by even my closest family members and friends. I felt too ashamed. It wasn’t as if I was just lying in a hospital bed all day getting medicine and needed to be occupied because I was bored and had nothing to do. I was actually fighting to exist every day I was in the hospital, which I always refer to as the “torture chamber.” I will go into more detail about my feelings related to being a patient in the hospital another time but did briefly want to mention my nickname for Mt. Sinai Hospital. My brother came to see me one time and that was only because I was feeling well enough to be discharged the following day. My grandparents also spent only a few hours with me one afternoon out of all of the many days/nights I have spent in the hospital. I would never even allow my best friend from high school, Gina, to come see me when I wasn’t doing well and she was one of the only people outside of my family that actually knew the details of what was going on with me. This isolation, and feeling like you need to withdraw from everyone else and just be in your own little world, is sometimes necessary, but also can and often is very detrimental to someone’s well being. We aren’t meant to go through life alone. We are supposed to travel in this journey with family and friends. Our loved ones who are in our lives help to shape our memories and the special moments that stick out in our head when we think about all of the good times. Even in times of struggle and hardship, the moments that I clung to were those that obviously brought me great joy. And I can tell you that in not one of those memories was I ever alone. I was always doing something or in a specific place and was surrounded by family and/or friends.
Missing out on family events, special occasions, and plans with friends are all too common for those of us struggling with IBD. It is just one of the many reasons that make living with a chronic illness (such as crohns disease or ulcerative colitis) so difficult to deal with. It doesn’t just take its toll on you physically, but there is an enormous emotional component to it as well. I hope to expand on this topic at some point in another post but did just want to spend a little time talking about it now since it was definitely something on my mind that I know a lot of others have a hard time with also.