Biologic drugs have the ability to give many of us in the IBD community a chance to live a much fuller, and well-rounded life. But there are trade-offs, especially when it comes to our immunity and the ability to fight off infections. As a mom of a 2-year-old and 6-month-old whose been on Humira for more than 11 years, I’m extremely cognizant of protecting my kids from sickness to not only protect them, but myself. I often feel as though people may think I’m over the top with worrying about illness in my household, but quite honestly, unless you or someone you love is immune compromised, it can be a difficult concept to grasp.
This week–a special feature from a Maryland elementary school teacher with indeterminate colitis. Meet Lisa Lacritz. She’s a 38-year-old wife and mom who juggles two autoimmune diseases. She also has Hashimoto’s disease. Since she started on Remicade in 2018 following her IBD diagnosis, she’s experienced the difficulty of warding off illness while being an elementary school teacher and a mom to a young child.
“Shoes off, hands washed!” My son knows the routine by heart. Every time we come into the house, shoes come off and hands get washed. I like to think that all of my years spent worrying about germs when I didn’t need to be, were fantastic training for when I actually needed to be concerned.
When I was diagnosed with IBD, I was hesitant to get on a biologic because of my fear of being immunosuppressed. I’m an elementary school teacher and when I started on Remicade infusions, my son was only six. I basically spend my day in a Petri dish. Dealing with the symptoms of IBD was more than enough–how on Earth would I be able to handle that plus avoid picking up viruses at school and in public?
Taking steps to be proactive
After I got sick on the second day of school last fall, I decided that washing my hands frequently wasn’t going to cut it. I have always been a frequent hand washer, especially at school, but I needed more protection. At first, I was nervous about how others would perceive me. There were a lot of confused looks by coworkers and students when I would politely decline to use someone else’s pen. I started carrying a pen with me everywhere to ensure I wouldn’t have to use a communal pen. Now people know that I always have “my” pen with me and that I don’t share it with others.
Another thing I’m very careful about is touching door handles and knobs, especially the door to the main office. The main office is where you can find the school’s health room, where every sick kid passes through. I either wait for someone else to come and open the door, or I use a barrier such as a paper towel to open it and then wash my hands right away.
I never touch my face and I keep my phone in a plastic bag (quart size bags work great!) so that I keep school germs at school. Kids are definitely puzzled by that last one, but I explain that I need to keep germs away as much as possible, and if I need to touch my phone then my phone gets the germs on it so I protect it with a plastic bag.
Worrying less what others thought and making my needs a priority
I really needed to stop caring about what others think and prioritize my health. One of the most surprising things to me was that people really don’t understand what immunosuppression means. Some people think I’m just a paranoid germaphobe even after I’ve explained that I’m immunosuppressed. They don’t understand that a simple cold for them, can mean days of sick leave for me due to a secondary infection. Or a fun day swimming in the bay can mean a bacterial infection for me that lasts for weeks and causes symptoms similar to a bad flare.
Yes, it is mentally exhausting to worry about immunosuppression on top of all the other things chronic illness brings. Plus being a teacher. Plus being a mom.
As much as I hate getting sick, the worst part for me is missing out on doing fun things with my son. Somehow my body knows when we have something fun planned and chooses those times to conk out on me. When I’m lying on the couch at home feeling sorry for myself while my husband and son are at a friend’s New Year’s Eve party or Memorial Day BBQ (both events I missed this year), I try to remind myself that Remicade is what allows me to lead a relatively normal life and be able to do things like go sledding with my son on a snow day and take him Trick or Treating. I couldn’t do those things when I was in a bad flare before treatment and definitely can appreciate them more now. I just make sure shoes come off and hands are washed right when we get home.