Crohn’s is not only a disease of the digestive system; it can also cause skin, vision and joint problems. No two cases of Crohn’s are the same, so the locations and severity of symptoms vary from being relatively mild to severely debilitating. Between the symptoms, frequent appointments, tests and procedures, this disease has a profound impact on a person’s quality of life. For me, it’s rare for me to go a week without having at least two doctor’s appointments.
So much more than a physical disease
It’s important to know that Crohn’s can be just as painful emotionally as it is physically. Over time, living with such a debilitating disease takes a toll on our bodies and minds. Because the disease impacts all aspects of life, people with Crohn’s often experience a domino affect of emotions. Such as relief, shock and denial, along with anger and sadness.
Emotional reactions come in stages.
Stage one is relief, shock and denial.
After hearing your doctor say, “The tests came back positive for Crohn’s disease,” most say they feel a sense of relief. After feeling sick for so long and the documented cause for the symptoms go from “cause unknown” to “Crohn’s disease.” It’s such a relief to finally have answers, but that relief is short-lived. As the doctor begins to explain exactly what Crohn’s is, and what this diagnosis means for you, it’s a bit overwhelming. I was both shocked and confused by what I was hearing. What could have caused this and why me? I started questioning if the test results were correct or a false positive. I remember thinking surely there must be some mistake it couldn’t be Crohn’s. Denying having the disease seemed easier than accepting the test results were right.
Stage two is anger and sadness.
Anyone diagnosed with potentially debilitating conditions has a right to feel upset and angry. I felt it wasn’t fair or reasonable for this to happen to me. As I accepted my doctor confirming the results were right, I was both angry and saddened. I was overwhelmed.
In many ways, people diagnosed with Crohn’s grieve about the life they had pre-Crohn’s and never being able to go back. The fact there is no cure (as of yet) is heavy on your heart, as you realize your future life wont be as you pictured it would be.
Stage three is fear, anxiety and embarrassment.
A lot of anxiety comes with living with Crohn’s because of it’s unpredictability. For many reasons, leaving the comfort of home is worrisome. Not knowing when symptoms will pop up, or where you’ll be when they do makes planning your day hard. Whether it’s going to work, running errands, going to a friend’s homes. Will you be near a rest room should you need one? Even when you’re in remission, there’s always the threat of a flare at any given time. Many people with Crohn’s are anxious and embarrassed about telling others you have it and what the disease causes. Up until I started writing this column, I only told certain people about having the condition.
The dangers and complications associated with having Crohn’s disease can be serious and scary, such as strictures, intestinal obstructions, perforations, fistulas, toxic megacolon, cancer, and arthritis. It is scary to imagine the possibility of any of those complications happening to you. Needless to say, living with the uncertainty and knowing the disease is out of your control, causes a lot of fear anxiety.
You are stronger than you think
I once read a poem by William Ernest Henley called “Invictus” that sends a strong message I believe can apply here. He wrote this poem while dealing with medical problems himself. There are a couple of stanzas in particular that I would like to share, along with my interpretations of them.
“In the fell clutch of circumstance I have not winced nor cried aloud, under the bludgeoning’s of chance my head is bloody but unbowed”
To me, this means that despite having suffered within, one is able to bravely move forward, refusing to be defeated.
“It matters not how strait the gate, how charged with punishments the scroll. I am the master of my fate, I am the captain of my soul.”
No matter what has happened, or how bad things will get, have the ability and determination to strongly move forward. Take charge and never let hardships consume you. Knowing your fate lies within your own hands.
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.