“But you don’t look sick...”

COVID-19 has brought those with chronic and invisible illness to the forefront. Or has it?

As the pandemic drags on, numbers rise, and political views heat up, the main risk group is still predominantly presented as the elderly. Yet there is a whole subset of people with chronic and invisible illness. Those with asthma, heart problems, auto-immune diseases, cancer survivors… the list goes on and on. But we aren't seen as sick; rather, we are seen as young and thus “safe.”

COVID-19, in my opinion, has highlighted the plight that those of us with invisible illness battle on a day-to-day basis. It’s the dichotomy of functioning and looking “normal,” yet falling into a high-risk category. How do we balance this?

COVID-19 has been a particularly vulnerable experience for my husband Mike and me. In our daily lives (pre-pandemic), we relish in our normalcy. Although I live with HLHS, I do remarkably well and like to keep my diagnosis on the down low. Sure, I focus on HLHS on my terms—when I’m speaking, advocating, fundraising, blogging, etc.—but otherwise it is a secondary part of my life and not my main focus. This, in turn, shapes how those around me view me as well.

Yet, since COVID-19, we are having trouble reconciling the two facets of our lives. Typically, we shy away from differentiation—but now it’s become much more of a life and death situation. That alone still blows my mind. 

Recently I’ve felt as if I’m on the outside looking in on the rest of my family and peers. While things move more towards reopening and “normal,” I’m stuck battling with my high-risk status and profound fears. We feel understood by our support group…. but also, not. It’s been a tough emotional line to walk. 

For this post, I wanted to invite my husband Mike to share an experience he had in the grocery store about a month or so ago. Below are his thoughts. I’m sure many of us in this community have had a similar situation. 

Kelly and I have been together for nearly 11 years now, and I never imagined her story would turn into “our” story, but here we are. Not only am I her supporter, I am also a provider and—weirdly enough—now a CHD patient as well. My first role as supporter is the one I cherish and hold truest to my heart. I became a provider with her at the forefront of my mind. When COVID began, our usual high precautions amplified into full blown survival mode.

The week of March 10th, I advocated with cardiology to have Kelly begin working from home. I obsessively cleaned everything and stressed over the fact that we were scheduled to move into our new apartment a week later. I remember going to the grocery store for the first time at 5 a.m. in my mask and scrubs and got lucky enough to find sanitizer wipes—the cashier insisted I buy extra. When I got home, I completed a cleaning and sterilizing process of every purchase—all in all it took close to five hours to shop, clean, re-clean and put things away. This was at the height of the beginning of the pandemic and mass uncertainty. We quickly switched to Amazon and Instacart and have used those services for 90% of our shopping since. 

However, every once in a while, I go to the grocery store during the 7 a.m. - 8 a.m. hour, which is reserved for the elderly and those who are immunocompromised. When I walked in that morning, I was immediately questioned by a sales clerk. I stated that my wife and I have heart disease, with my wife’s being especially serious as she lives with only half of a heart. The clerk stared back at me blankly. He was lost and unsure of what to say. He did not want to let me in. I was beside myself and felt strangely guilty.

Later, Kelly and I wondered, “why the guilt?” We still don’t really know. Is it because we look so healthy? Function so normally? Hate to have the attention on us? Having to defend my family’s health was a new experience for me.

With hesitation he let me in, and I shopped in anxiety, trembling the whole time. Why? Again, I don’t really know. At the end of the day I am just doing my best to keep Kelly (and myself) as healthy and safe as possible. It also hit me again that I too have heart disease, a newer piece of my identity.

After I finished shopping, I spoke with the clerk again and he expressed how astonished he was that Kelly lives with half a heart. He admitted he couldn’t really fathom what I was saying because I am so young. I know he was just doing his job, but for the first time I felt judged.

This has been an emotional time for absolutely everyone. It is important now more than ever to exhibit kindness and empathy. To realize that we have no idea what is going on under the surface in anyone's life. My career as a pediatric cardiac sonographer has opened my eyes to that even further. A lot of disabilities are invisible, but your reaction to them isn’t. Share your story, and let’s change the narrative surrounding invisible illness. 

_______________________________________________________________

Mike DiMaggio was born with two atrial septal defects that went undiagnosed until his early 30s with secondary pulmonary hypertension. He underwent a cardiac catheterization in January 2018 and received two Amplatzer devices. He lives happily with his wife, Kelly (a 31-year-old hypoplastic left heart syndrome patient) in Bethesda, MD, and works as a junior pediatric cardiac sonographer in our nation's capital. Mike loves his career and the budding relationships he is cultivating within the congenital heart disease community. In their free time, Kelly and Mike enjoy working out, traveling, cooking and spending time in nature.