A diagnosis of crohns disease or ulcerative colitis at various stages of life brings with it completely different experiences. This topic was really brought to my attention this past week and I think it would be cathartic for me to talk about and also really important for others to understand. Being sick at any age is difficult but there are different reasons. As most of you know, I was diagnosed with severe ulcerative colitis at the age of 13 and it has impeded on every single inch of my life since that July day in 2000. But the more people I talk to and the more stories I hear, the more I realize just how much of a difference the age in which a person is diagnosed impacts them developmentally.
At the age of 13 and through your high school years, you are trying to find yourself. That is a time of experimenting, of figuring out what you like, what you don’t like, what kind of people you are into, what morals and values are most important to you, career possibilities, etc. It is often a confusing time for many but what happens to a person when they are diagnosed with a chronic illness like UC or crohns disease during these very formative years?
The answer to that question would take about a week and a half, so I am going to give you the extremely abbreviated version.
Having been diagnosed during this time caused a lot of developmental issues for me. I became very reliant on my parents because I was so sick and since that has been the case for the last 12 years, I was never able to gain my independence like other people. A doctor spoke of UC as a “permanent umbilical cord” and that was one of the best ways I have ever heard it described to me.
Then there is the emotional devastation that comes with being a young teenage girl (13 to 14) having to take prednisone. Being on prednisone and dealing with just the cosmetic side effects alone was devastating to me when I was 13 and 14 years old because the focus on appearance was enormous. It is also very hard for peers to understand because kids generally don’t get sick. They aren’t supposed to so it is very difficult for people to hear about their friends falling ill thus leaving the patient to feel very isolated. I could go on and on but I think some of these things will overlap.
A friend of mine who was diagnosed with ulcerative colitis at the age of 18 said something to me a couple of weeks ago that stuck out in my mind and that was about the difficulty she had with guys while away in school.
It was interesting to me because by the time I was 18, I already could tell within five minutes if a guy had the potential to handle my situation or not. It was of course on my mind, especially because through the age of 19 I had an ileostomy, but it wasn’t as pressing as it seemed to be for her and many other young adults I know diagnosed during their college years. I wasn’t at all settled into myself by this time but I also had to keep reminding myself that my case was particularly severe.
When you are diagnosed with ulcerative colitis or crohns disease during your college years (18-23), your whole world must feel like it is crumbling. After all, you are just starting to venture out into the real world and begin your new life. Everything you knew for 18 years or so is suddenly gone and you have to completely readjust your whole outlook. Imagine the first time you are really away from home, in a new place, with people you never met, and all of a sudden you have very little to no control over your bowel movements. You now have to micromanage everything you put in your mouth, are playing trial and error with scary medications, and all you want is to fit in and be “normal.”
I am not going to even touch on how a person’s academic performance suffers because that would be a whole other post.
Inflammatory bowel disease is known to affect many young adults so there are so many new cases each year of people being diagnosed in their mid to late 20’s. By this time, a person is generally more settled since they presumably have spent their life as a healthy person who was able to go through life in a pretty typical fashion. Of course everyone is different but developmentally, when a person is diagnosed in their mid-late 20’s they are in a very different state of mind and being than someone who is diagnosed in their early teens.
This topic is extremely important to me and I am going to do my best over the next couple of weeks or so to share some personal stories or quotes here and there from people who have been diagnosed with either ulcerative colitis or crohns disease during various stages of their lives. The developmental and emotional impact these diseases has on a person is enormous and the age in which a person is diagnosed with IBD greatly impacts the life experiences they will have.
On a side note, I am honestly not that knowledgeable about what being diagnosed with IBD before the age of 10 does to a person/child so I REALLY welcome any feedback and stories from parents and/or fellow IBDrs who were diagnosed prior to the age of 10. Please email me at email@example.com and I will do a separate post on this once I feel like I can give you guys more educated insights.
Thank you to my wonderful friend, Jaime Weinstein(http://prettyrottenguts.tumblr.com/ ) for editing this post.