Inability to Live “Life by Design”
I see a lot on social media about “living life by design” and it has me thinking about how living with a complex, chronic illness like inflammatory bowel disease really impacts every area of life. I know it is different for everyone, but for me at least, it has taken away my ability to live life the way I truly desire.
Before I go on, I want to state that I personally don’t believe in the phrase “anything is possible if you put your mind to it.” I don’t mean to sound negative, but some things flat out are impossible for someone to achieve while battling such a serious disease. It is important not to lose sight of the fact that we are all individuals who are dealing with our own unique challenges related to Crohn’s disease or ulcerative colitis.
There are many variations to the way in which IBD impacts a person’s life and to what extent.
Let’s break it down.
People who suffer from a form of inflammatory bowel disease (IBD) are often in and out of life, making it difficult to finish school or whatever training is needed for the career of your choice. Dealing with pain, medication side effects, fatigue, insomnia, problems with food, intense emotional distress, etc makes it pretty difficult to thrive. Not impossible, but very difficult. If you are already in your desired career field, Crohn’s Disease and ulcerative colitis can hinder your ability to meet the demands of the job.
For example, when I realized how terrible I was at chemistry and therefore could scratch MD off my list of career choices, I turned to the field of psychology. I always found that topic fascinating and do think I am able to understand people fairly well so I wanted to be a psychologist with a subspecialty in chronic illness management. Given that it took me five years to get through high school and six and a half (including some summers) to receive my bachelors degree, there was no way any part of my body could handle more school. I had the option to do a five year program and graduate with my masters in social work, but because I was so in and out due to surgeries and countless hospitalizations, that didn’t work out well.
People who live with a chronic illness need a very understanding, sympathetic partner. Needless to say, not all people have the ability to handle being with someone who goes through so much on daily basis. Because of this, sometimes individuals settle, put up with things they wouldn’t otherwise or think they don’t deserve to be in a truly happy relationship. There is a lot of guilt and self doubt intertwined.
It is hard to maintain friendships if you are MIA for so long. Or if you need to cancel plans a lot. People tend to move on which makes someone feel very isolated, lonely, and understandably, depressed.
Starting a Family
Surgeries, disease progression, and medications are just some of the reasons why inflammatory bowel disease can impact a person’s ability to have children. This occurs in a couple of ways. The first being that someone might not be physically able to procreate because of the toll the disease is taking or has taken on their body. The second being that someone who is sick most of the time cannot raise a child. I always said I wouldn’t bring a child into this world unless I knew I could be the kind of parent he/she deserves. This topic is an emotional one for me personally, but alas, I hope you know you aren’t alone if it is triggering for you too.
IBD has greatly hindered my ability to just move anywhere. I am not able to be on my own which puts limitations on me. A psychiatrist once told me that my disease was like a permanent umbilical cord to my parents which I thought was a great analogy. I also need to live in a place somewhere close to doctors and a hospital that knows how to deal with complex medical issues.
For starters, I am always afraid to be anywhere that doesn’t have quality doctors who take my insurance. Secondly, my fatigue, sleeping issues, and pain greatly impact by ability to be out and about for an entire day, let alone enjoy a vacation. I never feel like I can really just “let go” and be free. Bathroom locations and eating are often on my mind.
There are other areas of life that living with a chronic, invisible illness like inflammatory bowel disease can greatly impact. I am in no way saying a diagnosis of IBD means you are flat out screwed in life. Absolutely not. There are many, many people who are in remission and living a life that truly makes them happy. As I said in the beginning of this article, we are all in different places in our journey and inflammatory bowel disease impacts all of us in such unique ways.
I just hope any of you reading this who may feel similarly knows that you are far from alone. This part of my life frustrates me to no end. I know how devastating it can be to have so much vision and drive, but your body just won’t allow you to carry out the things you want to in life. Nothing is forever though! I try to ingrain that in my mind 🙂