The Questions I Ask Myself When I Wonder If My Illness Was My Fault
Nine months after the birth of my first child, I was diagnosed with ulcerative colitis. I was working as a service manager for a small, start-up company and had returned to work after just a six week maternity leave. It was a high stress job, one that I was ill suited for and unfulfilled by. It paid well, however, and my husband and I weren’t in a position to be a one income family. So when the time came to go back to work, I pulled back out my second trimester maternity work pants from the closet and headed back in to the office.
I cried alone in my car on the drive to work for weeks. I would clean up my face in the parking lot, and then force a smile and walk in ready to tackle the day. I pumped breast milk in my office three times a day so that my daughter could get the antibodies that I had read were so beneficial. Then I’d race home and try to spend every minute I could with her before bedtime and then get up two to three times during the night to nurse her. I have very vivid and beautiful memories of those moments with her, probably because I was so desperate to be present and felt so much guilt when I was away from her. It was exhausting.
Months passed and the grueling schedule and my need to please everyone around me began to take a toll. I was a walking zombie but resigned to the fact that I was stuck. What choice did I have? I told no one, not even my husband, how dark my world was. My body finally starting betraying me when I got pneumonia. I remember being at a work lunch and I got a call from the urgent care I had visited over the weekend for a nasty cough. The nurse said the radiologist had looked at my X-ray and I had pneumonia. I thanked her, hung up, went back to the meeting and never missed a day of work.
The pneumonia persisted and I ended up needing another round of antibiotics, this time a stronger one. My immune system was completely beaten down but I continued to push through at both work and home. It felt like everyone expected that of me, and I wasn’t going to let anyone down. Right after completing that round of medication, I started experiencing my first symptoms of ulcerative colitis (UC). I thought at first that the antibiotic had upset my stomach, but pretty quickly I knew it was more serious than that. Even before I went to the doctor, I researched online and read about inflammatory bowel disorder, which includes UC and Crohn’s disease. The first question I Googled was whether I would die from it. (The answer was no, not unless I develop colon cancer.)
That was 12 years ago. I have changed a lot during these years in ways that I don’t think I would have otherwise. That change started to happen just a few months after I was diagnosed when I tried to quit my job. I had become too sick to come in the office everyday and I finally told my boss I was sick. He looked at me and without hesitation said, “Well, what about something part-time that isn’t so stressful? You are a great employee and we don’t want to lose you.” I was completely taken off guard. Why hadn’t I had the confidence in my own abilities to suggest that long before? Why did I lack that inner strength and fortitude to put my own health and well-being first?
Occasionally I look back on that time and wonder “what if?” What if I had said I needed more time off for maternity leave? What if I had told someone about the depression I was going through? What if I had taken time off from work to recover from pneumonia and not allowed my immune system to crash? Would it have changed the course of my illness? I’ve done enough research to know that in most cases, you cannot point to just one smoking gun as the culprit. While I don’t have a family history of UC, there is certainly a genetic factor involved and I likely carry a gene (probably multiple) that predispose me to the disease. Beyond that, there are no certainties about the role the environment plays. Maybe if I had made different choices the outcome would have been different…or maybe it would have played out exactly the same. Maybe it would have delayed my illness by a year. Maybe it’s a lucky break that I didn’t get sick years earlier. No one can answer those questions for sure.
Since that time, there have been good and bad years, periods of remission broken by flare-ups that remind me that this is a disease with no real cure. In my current job in human resources, I’m lucky enough to be able to work from home when I need to and give my body the rest it needs. I still struggle with the feeling that I am being “lazy” when I slow down, but I’m working on that. I’m still a people pleaser, but for a much smaller, select group of people. I’m also a mom to two great kids, and while I do my best to be a present and nurturing parent, I’m far from perfect.
“Fault” is a tricky thing when it comes to illness. Having something to point to as the cause gives some order to the frightening and unknown nature of disease, but it also brings on needless guilt that isn’t helpful or healthy. From a disease prevention standpoint, determining the causes of a disease is essential to finding a cure or preventing future disease in others. On a personal level, however, I just have to let it go. In order to live my best life, I’m better off looking forward to my potential in the future than I am focusing on my mistakes from the past.
Getty Image by Viktor_Gladkov