Today, my brother Jeremy turns 25. He has been living in California for a couple years with his best friend. For the first time in about three years, he is home for his birthday.
Jeremy and I have been through a lot in our relationship. As most of you know, inflammatory bowel disease is a family disease. It may affect everyone differently but it impacts everyone.
Ulcerative colitis changed things between us. I never wanted him around when I wasn’t doing well (which unfortunately was a lot of the time when he was growing up.) I think deep down, it was my way of protecting him. He only came to see me one or two times when I was in the hospital and that was when I was about to be discharged. There was no way I would allow him there following any surgery. I also rememember so many times when he would call my mom while I was in the hospital, wanting to talk to me, and I would refuse unless I could portray a happy-ish voice.
I have heard this to be the case with other siblings but I won’t speak for others.
Jeremy and I were (and still are now) incredibly close. He is caring, understanding, and really does get it. He also made things so much easier on my parents. I never remember him giving them a hard time when he was sort of shuffled around so my parents could be with me either in the hospital, going to appointments, etc. He spent a lot of time with my grandparents and at friends’ houses. My parents were filling him in over the years since I wouldn’t go into detail so he has always been “up to date” so to speak with my health status (even living so far away.)
I know it can be sometimes natural to shut people out when you are in such a vulnerable state. Especially with siblings. No one wants to show their brother or sister, who is around their age, the intense pain they are in, having to run to the bathroom every five minutes and barely making it. ESPECIALLY if there is nothing that person can do to take it away.It is embarrassing too and since a sibling can also be the model for a “peer”, it adds to it. Acceptance is a huge thing with Crohn’s and ulcerative colitis patients. It can take a while to really come to terms with your disease and who you are.
Just so many factors at play! It is difficult to show pain (and a lot of the time screaming agony) in front of people you love. And I know the reverse is true. It must have been so terrible for my parents to see me in so many circumstances.
Would it have been better if I really let Jeremy in? I was 13 when I was diagnosed, and he was about to turn 11. Should I have shown him what was really going on? Let him see me without pain meds right after surgery? There were so many times my parents and I had to fight with hospital staff because they weren’t properly taking care of me. Should Jeremy have been included in everything he felt comfortable with? If he wanted to come visit, should I have let him at any time regardless of the state I was in? If I did, would we have been closer over the years?
I don’t know the answer to any of those questions. My gut right now says maybe I could have let him in more as we got older but then again, I don’t know how that would have affected him.
Anyway, I did want to give a shout out to Jeremy today. I hope he knows how much I love him. I hope he knows how sorry I am for all the chaos that went on throughout his childhood. I just hope he knows how much I appreciate him. And how thankful I am to have him as a brother.
Love you ug