Why Life With an Autoimmune Condition Feels Like a 'Tug-of-War' During COVID-19

As many of us probably do, I spend most mornings doing the same thing: watching the news. Call me a glutton for punishment—mainstream news is pretty overwhelming these days—but I find myself constantly grasping for any changes in the coronavirus status around my beachy hometown in Southern California, as well as the world. The state of California is bracing to open its doors back up hopefully in time for summer in many areas. But the county fair is still canceled. Comicon, which would have served as the financial bounce back for so many downtown businesses, is canceled. The Pride Parade is canceled, and the popular coastal walks and areas are still blocked up to cars wanting to park. It’s a lot. Despite feeling fairly OK thus far during quarantine, it’s still often a tug-of-war between hopeful and hopeless.

I roll my eyes at yet another morning of newsy mediocre maybes, shake my empty pill bottle and toss it in the trash. Time to open another. I had recently ordered three months’ worth of my ulcerative colitis medication at the anxious suggestions of my irritable bowel disease (IBD) peers. Despite my online pharmacy’s weekly emails about their full stock of medications—we are here for you!—I still felt this new sense of urgency to make sure I had more in hand than usual. And the CDC’s recommendation of at least two weeks’ worth of medication felt conservative to someone riding the coattails of a recent flare-up. After all, I fall into a “higher risk” category every time I pull on my face cover and step out the door. My weakened immune system could stay infected with COVID-19 longer than other patients. Therefore, I second guess every stride I take as I pass fellow runners, secretly cursing those who couldn’t care less about making space between us. Don’t they know that I need those extra precautions for my physical and emotional health? The answer is: no. They don’t, and it’s not their job to. According to some, the onus is on the “higher risk” population to simply take extra precautions, while the rest of the world goes about their business. At least that’s how I interpret it, as I unravel my buff and gasp for air once I hit my unpopulated, regular, monotonous loop behind my house.

I’ve been on immunosuppressants since 2007, and up until recently, I really didn’t think anything of it. I exercise six days a week (most recently staying at home versus heading out for a run). I communicate with my gastroenterologist. I eat a decent diet. I try to get seven to eight hours of sleep nightly and, especially these days, I work to manage my stress levels. Regardless, the threats of having a compromised immune system rings extra loud when there’s an invisible virus flying around, and those lifestyle habits suddenly feel pointless.

When I was first put on my medication, immunosuppressants were described to my 20-year-old self as “suppressing the immune system from fighting off the good stuff, but making it more vulnerable to the bad ones.” In my case, my specific drug is often used with additional chemotherapy drugs to treat forms of leukemia; it helps stop cancer cells from growing. So while the drug has essentially saved my life and kept me in colitis remission, it still calls for extra precautions in my day-to-day life. So here I am, huffing through my morning workout—lately something I’ve leaned on heavily for normalcy—sorting through the constant information overload. My mind races faster than my heart ever could, and I find myself bouncing between anger toward everyone disregarding the gravity of the situation and a desire to believe that everyone is doing the best that they can right now.

I hardly go to grocery stores anymore; that’s my husband’s job. I hardly interact with any other human in person, except from safely behind a face mask. I field comments like “I’m more worried about you” or “People who are more vulnerable just need to be more careful” frequently, simultaneously cursing and laughing at them and their lack of curiosity for my situation. After all, they are worried too; my crappy immune system just makes them feel guilty for that.

It’s a lot for any human to constantly chew on as the pandemic days get extended. Some days I feel like stepping my out of office and hiding under a blanket. Other days I want to scream at the next person who asks me how “worried” I feel. On some occasions, I write in my journal “How you feel now, during this pandemic, is how us patients feel every day of our lives.” After all, isn’t this whole situation one big fat flare-up that the entire world is experiencing? Thankfully, I’m well-versed in the world of limited activity and being chained to your house.

But most days, I still get up at the same time, assess how I’m feeling and select a way to sweat that feels good for that day. Because if there’s one thing I know to be true during this time of uncertainty, it’s that I’ll always feel better once it’s done. Because I know I’m doing the best that I can.

If you’re in the same boat as me, here are some precautions I’ve taken in my house:

1. Try and have someone else help with your errands, if possible. For example, elect someone else to do the grocery shopping, whether it’s a roommate, spouse or online.
2. Don’t skip your medications. If you have questions about them, call your doctor.
3. If you need to exercise, pick a route with little to no people. Or, curate an at-home workout of your own.
4. Take a break from the news. The stress of it all can be just as toxic.
5. Don’t feel guilty for how you are feeling. If you’re thriving during this time, that’s awesome. If you’re struggling, that’s valid, common, acceptable and understanding too.

Do you have an autoimmune condition? How are you coping during this time? Let us know in the comments below.

For more on the coronavirus, check out the following stories from our community:

• The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19
• If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me
• How America’s COVID-19 Response Is Exposing Systemic Ableism