Hello, My Name is Mom and I Have a Chronic Illness

16+  years ago, I became a woman with a chronic illness. But just when I thought I had a little more control of my health, I became a mom with a chronic illness. I didn’t think much of it until my now four-year-old started asking questions around the age of three like “why do you always have to go to the doctor?” or “why are you taking another nap?”

That’s when it started to hit me. While I have come to terms with my current and imminent health state (and my husband has too, as much as he can), I now need to figure out how to talk to my very young kids about my health— without scaring them.

At the age of 22, I was diagnosed with ulcerative colitis (UC), which is an autoimmune disease of the large intestine. My 20s weren’t the picture of perfection or health. I had flare-ups, hospitalizations, and many down days/weeks/months where I just didn’t feel like my normal self.

Over the years I’ve had blood transfusions, iron infusions, anxiety issues, and terrible infections. I’ve been on strong medications and steroids that suppressed my immune system and changed my body and emotions in ways I never imagined or want to experience again. Sadly, much of the physical scarring will never go away.

When I hit my 30s, I quickly realized stress was the main cause of my flares, and I worked hard to treat my body and mind better. During both of my pregnancies, I was “high risk” but was assured by doctors that remaining on my (really strong) maintenance medications was best for me and the babies. Luckily I had very healthy pregnancies as a result. But some days it’s hard to shake the fact that during both pregnancies I was literally injecting myself with medication that increases my risk of cancer and death (thanks, television ads!). But as the doctors all said, being flare-up free during my pregnancies outweighed my fear of the risks.

Now I’m faced with the fact that I have three young daughters who don’t at all understand what my UC means or could mean to me/them down the road. Heck, I know adults who don’t fully get how this disease has affected and will affect me. Like many others with autoimmune diseases, I might not always look sick, but I’m battling each day with the side-effects of my infusions, oral medications, and the emotional toll of always being “sick.” My daughters are first-hand witnesses to the effects–they just don’t get it yet.

So many well-intentioned people have said “God only gives you things you can handle” to me over the years. But I have to laugh. I don’t think God gives people illnesses so they can prove something. Am I the energetic mom I wish I could be each and every day? Not at all. My body has failed me many times, but it’s also provided me with three healthy children. I am determined to teach my daughters that their good health shouldn’t be taken for granted and that any hardship they might face shouldn’t define them or weaken their spirit. And while they didn’t take this vow with me on the altar, it’s one I will make to them today and always: for better or worse and in sickness and health, I’m their happily-flawed mom and they are my amazing daughters, destined for greatness. And we are all very lucky.  

Do you have an autoimmune disease or another “hidden” disease that affects your daily life? You’re not alone. For more information on autoimmune diseases and how they can affect women, please go to https://www.womenshealth.gov/publications/our-publications/fact-sheet/autoimmune-diseases.html.