When Genetics Aren't a Factor: I'm the First in My Family with UCby Jackie Zimmerman Patient Advocate
In 2006, I received the unexpected and eye-opening diagnosis of multiple sclerosis. I was 21 and no one in my family had ever been diagnosed with MS or had any symptoms. I didn’t know a soul in the world who had MS and I began to travel down the very predictable “Why me?” road.
Three years later, I received another unexpected diagnosis: ulcerative colitis (UC). No one in my family had ever been diagnosed with UC or had any symptoms. I didn’t know a soul in the world who had UC.
Deja vu, right? It was for me. How could I have these two very serious chronic illnesses when no one in my family had either? Aren’t these supposed to be genetic? Shouldn’t there have been signs? What about a test before I was born? How did I get such a raw deal?
As it turns out, it’s not terribly uncommon to be the lone ulcerative colitis patient in a family. But studies do show that your likelihood of developing inflammatory bowel disease (IBD) if you have a family member who has it, is much higher.
If you have one parent who has IBD at the time of conception, you’re at a 50 percent risk of developing IBD, but if both of your parents have IBD at the time of conception, your chances increase to 67 percent. There is some conflicting information about the exact stats for who will and won’t receive an ulcerative colitis diagnosis because there are more factors than just genetics. Sure, having a family member with UC means your chances are increased, but as proven with me (and many others), it’s not the only factor and science doesn’t yet understand all of those other variables. There are environmental variables to consider and there is new evidence linking chronic illness to childhood trauma, which means there are several reasons someone could develop UC, but pinpointing what that reason is would be tough and, in the long run, it wouldn’t change your diagnosis.
When I was diagnosed, not only was I completely uneducated about UC, but I didn’t have anyone in my family to serve as a reference point. Children with parents who have UC probably understand a lot about UC just from being a bystander, and if those children eventually develop UC, they are better equipped to handle their diagnosis. The silver lining to having a parent or close family member also living with UC, is they can give you support that the rest of your family cannot. As the only patient in the family, I had to find my own support network and in the end, I worked really hard to build a support network for other people through Girls With Guts. UC is by nature a very isolating disease, and I definitely let it isolate me from my friends and also from my family, which I now know was really difficult for them.
The hardest part about living with a chronic illness is that you are not the only person dealing with that illness. Your family is also dealing with it; just in a different way. At the time of my UC diagnosis, I didn’t share it with anyone — not even my parents — because I didn’t want to burden them with the worry or hassle of my new illness. I also didn’t think it would get as bad as it did, but when it did, I actually had done a serious disservice to myself and my family by excluding them from the beginning stages of my journey. I hadn’t given them the opportunity to learn about my diagnosis with me, and in the end, we all suffered from that choice.
What I wish I had known from the beginning was that by hiding my UC, I was actually being selfish because I didn’t allow my family an outlet to deal with their feelings or fears. My decision to be really private forced them to isolate from our extended family, thus limiting the support they got. Chronic illness happens to the whole family in one way or another and that was a very difficult lesson for me to learn.
Living with UC has been one of the toughest things I’ve done in my life, but because of my diagnosis my whole family is more educated now and, in fact, one of family members was more open to getting testing and later discovered she had diverticulitis. Each one of us has the ability to make change even if in a small way.
I am grateful that no one in my family has had to suffer with UC in the way that I have, even if I could have learned from their suffering. Instead they got to learn from me, and as I am a much better teacher than a student, I am also a much better patient than caregiver. Sometimes things work out exactly the way the universe wants them to, despite our protests.