Coping With the Regret That Surrounds a Chronic Illness

By Sneha Dave

Regret: the fine line between an emotional breakdown and the feeling of hopelessness. Those of you with or even without a chronic illness know exactly what it feels like to regret.

I am a freshman at Indiana University and was diagnosed with ulcerative colitis, a chronic inflammatory bowel disease, when I was 6. Truthfully, I have missed out on a normal life, but I have been equally fortunate with so many opportunities to travel and expand advocacy efforts for individuals suffering from inflammatory bowel diseases and other chronic conditions.

When I find myself regretting my medical decisions, I end up in an indestructible bubble of negative thoughts. Regret that surrounds a chronic illness can truly be the one emotional strain on top of insurmountable physical obstacles. We often regret our medical decisions; for example, whether we should have agreed to that irreversible surgery or not. I thought hard about my surgery, but it's been difficult – even now – and here's why.

I was a freshman in high school when my family and I decided it was finally time for the last resort we had: to have my entire large intestine removed (a colectomy surgery). It was an incredibly difficult decision, because the large intestine is irreplaceable. While many medical doctors have classified the colectomy surgery as a cure, I can testify that it is absolutely not. I live with inflammation and still undergo procedures, frequent doses of antibiotic treatment and an incredible amount of fatigue. Not having a colon affects my daily tasks, and as a first-year college student, it can be frustrating even as I consistently put a positive spin on each situation.

Here's what to recognize when dealing with regret, especially relating to your chronic illness:

1. You just cannot control some circumstances.

The decisions I made on my own often loomed over me as I regretted not trying hard enough. One instance, in particular, was when I had a suppressed appetite due to active inflammation and medications. I was put on a peripherally inserted central catheter, or PICC line, for nutrition, and I often blamed myself for not trying hard enough to eat. While I knew it wasn't my fault, every time I went in public with my PICC line, I would regret my "decision" to not eat. It was emotionally stressful for me when I had to explain my PICC line. I often felt that what was happening to me was because I did not try hard enough or hadn't kept ahead of my medical responsibilities.

2. Don't stand in the sticky sand of despair.

During my nearly 13 years of living with ulcerative colitis, I've been prescribed lots of medications – many that cause symptoms almost worse than the disease itself. There was a 6-month period where I refused to take my lowered dose of six large capsules a day (down from an original eight capsules) because I felt so good and normal without them. That period where I did not take medications could have led to what came ahead: a life with severe inflammation. It used to really bother me that I didn't take my medicine for that long. Without being self-deprecating, I quickly learned that it was unnecessary for me to think about one topic instead of focusing on the positive and trying to fix my situation at hand.

3. Rest, and don't regret it.

Still to this day, every time I miss a class in college, I feel incredibly awful. Earlier this year, I was paralyzed with pain in my abdomen. I had to skip class and was upset because I didn't know how to explain it to my professor or if he or she would be understanding. Not to mention: How do I explain to the person sitting next to me, who I will seek help from for notes, that I was sick when I clearly was not visibly sick? As a chronic illness advocate, I sincerely believe in educating people about your chronic illness, but it is difficult to do so for the smallest reasons such as asking for notes. The same way I felt bad about missing a class, many chronic illness sufferers feel guilty about missing an event and stress about how to tell someone they were sick. Never feel guilty about resting, because it is likely what you need most.

4. Let yourself relax and experience joy.

My mom, dad and I took a trip to hike this summer. While I was climbing up a very steep hill that my father pushed me to climb, I realized how far I had come. It was incredible. I, the same person who a couple years ago had difficulty putting one foot in front of the other without feeling dizzy, could climb a difficult hill and feel great while doing so. It is absolutely necessary for you to get away from your comfort zone and experience nature or whatever may relax you. Abandoning yourself in something that you really love and enjoy can be more healing than anything else. Living with a chronic illness is not easy, and you certainly deserve it.

I can't recall what it felt like to not have ulcerative colitis and its consequences, and I'm OK with that. In the most positive context, I'm OK with having missed class field trips and birthday parties. I'm OK with the physical pain that I have faced and will face. But most of all, I should feel OK with the medical decisions I have made, and not let regret steal joy – or let it do the same to yours.