When I was first diagnosed with ulcerative colitis, I had so many physical challenges to deal with that I couldn’t even think about how it was affecting me emotionally. For the first four years, I barely talked about how I was feeling psychologically. I talked about the pain I was in. I talked about how upsetting it was to have a flare up just as I was settling into life again. I discussed how much I hated being on prednisone. There was obviously crying and more to it than just those three things I mentioned but the point I am trying to make is that I have always found it very difficult to deal with the emotional component of IBD when my physical health was not stable.
I never opened up about the emotional ramifications of all that I have been through until the fact that I would be living with a permanent ileostomy really hit me. When I made that decision, I was 16 years old. I was spiking 105-106 fevers. I was in the hospital feeling like death constantly. I was being poked and prodded by so many. I just wanted to make it stop. So in May of 2003, I had my Jpouch, rectum and anus removed and gave in to having a bag for the rest of my life. That was a great decision for me….until the word “permanent” really resonated in my mind. It was then that I became so hell bent on getting rid of the bag, regardless of the cost.
At the age of 17, four years after my life altering diagnosis, the cumulative effect of all that I had been through really hit me and hit me hard. Once I started talking, I found it difficult to stop. That was, until I was met with another physical challenge to overcome. Whenever I would have to deal with a physical obstacle, I immediately stopped talking about it in any serious way. I just couldn’t handle it. My mind needed to be focused on one thing…either my physical issues or my emotional well being but it could not be both. I only really had the strength to endure all that I have because as soon as I was met with a physical obstacle, I shut down the emotional part of myself. I had to because if I really stopped to analyze and talk about all that I was feeling, I would have fallen apart. And I couldn’t afford to fall apart during crucial moments in my health. If I broke down, I knew there was no getting up since I was met with so many physical challenges back to back. I knew that it would be extremely difficult, if not somewhat impossible, for me to get through all that I needed to. I also knew my parents and brother had enough on their plate and couldn’t deal with me falling apart as well. They needed me to be strong so I could fight. I needed to be strong so I could fight.
I don’t know about anyone else but I find it very difficult to deal with emotional issues when there are still a lot of unresolved physical challenges to overcome. I think that is one of the reasons I opened up when I did. When I finally had a period of sustained health, it sort of allowed my emotions to catch up with me. I don’t want anyone to think I wasn’t emotional prior to a few months ago. I definitely had my days, and a lot of them, where I cried and just needed my parents to hold me. However, one thing I have learned is that you can’t force yourself to talk. You can’t and shouldn’t force anyone to open up until they are ready. I have had so many people (my family included) tell me how beneficial it would be if I opened up more to people and embraced my community. I have been basically told that weekly since the age of 13. The bottom line is that a person will open up and share their feelings if and only when they are ready to do so. You can certainly encourage those who are struggling. You can send them links and give phone numbers for support groups. You can do research for those people suffering to give them an idea of the kind of help and support that is out there (like my Mom did for me). But, you can’t make someone talk.
Crohns disease and ulcerative colitis are life altering diseases. They are embarrassing illnesses which makes the whole experience 10times harder. It takes time to adjust to the diagnosis. It takes time to deal with the loss of normalcy and control over your body. It is all a process. I don’t know anyone who was diagnosed and then a month later, they are sharing their story, advocating the shit out of it (pun sort of intended). For me, it took 12 years. I have friends who were able to be open soon after diagnosis, I know people who needed a couple years, and I know people who have been in the closet for longer than I have. It also depends on the severity of your disease.
If someone you know is suffering from IBD or any type of chronic condition let them know you are there for them whenever they are ready to talk. Let them know that you are happy to come over and talk about other things. You can be there for your friends and family who are sick just by simply being present. Watch a funny movie, talk about a stupid soap opera, etc…
My dad often told me that I was like a caterpillar that would turn into a butterfly if I only let out all of the emotions I was feeling deep down inside. I am just starting to turn into a butterfly now. It just had to happen on my terms and on my time table.