Living with an Invisible Illness During a Pandemic

3/23/20
WRITTEN BY: Lala Jackson
FacebookTwitterEmail
 

On the outside, I am a young, able-bodied woman who eats well, is active, and is extremely fortunate to have a sustainable income uninterrupted by closures. Simmering beneath the surface is the underlying issue no one sees by looking at me: I live with a chronic, autoimmune disease – type 1 diabetes. Sicknesses that are uncomfortable for others could be fatal for me.

After 22 years with this disease, my sick day management routine is pretty sound, but the novel coronavirus, which leads to the COVID-19 viral disease, presents variables I’ve never dealt with before, and that’s scary. I have had to go to the hospital for the flu before, since dehydration and vomiting can become fatal quickly when trying to manage blood sugar levels with administered insulin. If I were to catch the novel coronavirus, I’m worried about the effect treatments like steroids would have on my ability to keep my blood sugar levels in a healthy range. 

From well meaning friends, neighbors, and strangers on the internet, I’ve heard a lot of “everyone will be fine, only the sick and elderly are going to be hit hard.” I imagine they’re not thinking about who is on the other end of that message, and that I’m included in the population who would be hit hard.

I’m trying to not be scared of the data that says that people with diabetes face more serious complications if infected with COVID-19. I don’t know how representative that data is of my unique situation, or how my situation compares to someone who is dealing with multiple factors of risk, like older age or other chronic illnesses, which often co-occur. 

Over the last few weeks, my personal anxieties around COVID-19 have been widely varied. I think that’s true of everyone right now. In the back of my mind is a constant worry – what if I do get sick? Will a burdened medical system be able to give me the attention my complex situation would require? Will emergency staff listen to me when I say I need extra help? I look like an otherwise healthy young adult – will people take my situation seriously? The current public discourse leads me to believe the answer to the last question might be “no.” 

Nevertheless, I am attempting to do my part to keep others healthy while participating in ways to support my community members whose paycheck and livelihood is currently being impacted. I’m doing exactly what we’re all trying to do – get each other through this.

Because of my many privileges – being able to work from home without interrupted income, having strong health insurance and enough insulin and medical supplies to last me for a while if I need them, having the income for and access to healthy food, having internet at home, and knowing I have a strong safety net of friends and family to support me – my panic levels remain relatively low on most days. 

But even if I don’t personally get sick, I can’t help thinking about all the people with Type 1 diabetes and other chronic illnesses who don’t have my privileges. What about my friends who are primary caretakers for their elderly parents? What about my fellow people with Type 1 diabetes who have gotten or will get COVID-19, but don’t have access to things like a continuous glucose monitor (CGM), or the extra insulin they may need to manage the elevated blood sugars that come from an immune system trying to fight off a virus? What about the restaurant and retail workers who just lost their income or their health insurance? What about all the people who don’t feel comfortable speaking up for what they need to healthcare providers?

If we’re really going to get through this together, I ask you to be thoughtful of your neighbors, your social media network, and your community. I know people can’t tell I have an illness that makes sicknesses like COVID-19 an extra level of anxiety-inducing, but I can hear you. Older folks can hear you. The people most at risk right now can hear you.

How can we rally around these communities instead of othering them? Look for the helpers. Be kind to one another. Consider what you can do. And wash your hands. 


Click here for more information and resources on Coronavirus and type 1 diabetes.



Lala Jackson

Lala is a communications strategist who has lived with Type 1 diabetes since 1997. She worked across med-tech, business incubation, library tech, and wellness before landing in the T1D non-profit space in 2016. A bit of a nomad, she grew up primarily bouncing between Hawaii and Washington state and graduated from the University of Miami. You can usually find her reading, preferably on a beach.