I have been reading a book that is called “The First Year” by Jill Sklar. This past weekend I read a chapter about the grieving process. I never gave much thought to the fact that a lot of the emotions felt after being diagnosed with an incurable disease might have a lot to do with grieving. Jill goes into detail about how people might cope with the fact that they have been diagnosed with a disease that they will have for life. I was surprised to find that I have recently felt a lot of the emotions that she talks about.
Lately, I have had a lot of trouble with anger. I never thought that this might be a mechanism that is happening because I am having trouble handling what comes with Ulcerative Colitis. The pain, unpredictable anxieties and undeniable lonely feeling. Not lonely in a sense like no one is there for me, but lonely like no one can understand my pain or my symptoms like I do. Jill discusses this and as soon as I read the sentence I immediately related to it. I lash out at the people closest to me not because it’s their fault, but because I feel that they don’t quite understand.
Jill suggests personal therapy, as my family and boyfriend also have. I have dealt with my diagnosis in my own way. Finding a new job that isn’t so stressful, surrounding myself with people that mean the most to me, and trying to relax at home at night instead of having a normal life of a 24 year old and spending my weekends at the bar. At times, I feel that this disease is controlling me and my life decisions and that frustrates me as I’m sure it does others. It’s hard to not be in control of your own life anymore, as pain and cramping can strike at any moment. It has been excruciatingly frustrating for me to constantly have to worry about when I will have to run to a bathroom. During work meetings, interviews, dinner with friends, movies, etc.
Yesterday we went hiking and as soon as we found that the park’s bathrooms were closed because of the season, I began to have anxiety. I tried to brush it off, but no more than 40 minutes into our hike I noticed my legs were shaking and I was sweating. I said, “We have to figure out where a bathroom is. I can’t enjoy myself knowing that there are no bathrooms around.” My boyfriend suggested we leave, which was annoying to me. We had driven so far and my disease was completely ruining the beautiful day outside. I walked to the car defeated by Colitis once again. We drove no more than a minute down the road and found a visitor center with an accessible bathroom. As soon as I saw it I felt completely normal again. We were able to finish our day hiking. It is so strange how my mind and body are now tricked into having to know where a bathroom is. Now that its been over a year and I have been dealing with situations like these pretty much daily and have bottled all these emotions, I believe it is finally starting to affect how I act. Not to mention I’ve been on prednisone for about 13 months now and we all know that roid rage is an unfortunate side effect.
I have found that being involved with the CCFA has helped me feel like there are others out there that are suffering like me. I attended a meeting for the planning of an event they put on every November. I spoke with a women who has Crohn’s and whose son has it as well, along with learning disabilities. He had had many surgeries and still struggles with symptoms every day. That was the first person I really spoke to that also had an IBD. Her and her son’s story struck me. There are so many people that fight battles and whose stories change perspectives.
My suggestion for those who feel that they are going through a grieving process because of a life changing happening such as being diagnosed with an auto-immune disease is to keep going. Find ways to be involved and help others who may be worse off than you. It has helped me feel so much more self worth to be involved and help the CCFA fund raise and spread awareness. Having anxieties and intense emotions are going to come with the process. It’s all about how you handle them. You can bottle them like I have or you can share your feelings with friends and family. Though it is difficult to first tell people about your diagnosis, more people know about IBD’s than what you think. Telling one more person is helping to spread information and awareness. We are in this together and supporting each other, sharing stories and feelings is only getting us closer to finding cures.