Let’s face it: type 1 diabetes has always been a huge annoyance. There’s nothing fun about always living on your toes, and there’s nothing normal about eating in your bed in the middle of the night. But the good news is that type 1 hasn’t stopped me from doing anything in life. I went to college thousands of miles away from home, traveled to numerous countries alone, and have held a successful career at Google for nearly five and a half years now. And even the things I worried about most as a young teen – like how it’d affect friendships and relationships – turned out to be a non-issue. The right people have always been by my side and supportive.

Type 1 has shaped me and even improved my life in such significant ways – and while of course, I’d get rid of it in a second if I could – I’m very appreciative of the personal growth, responsibility, and resilience it’s instigated. I’ve always tried focusing on the positives of type 1 – if I’m “stuck with it,” I might as well own it, control it to the very best of my ability and determine a way to thrive. And for over 12 years with this mentality, I’m fortunate that I have thrived with type 1.

While I naturally have a cautious personality, I’m a firm believer that it’s useless to worry about things out of your control. But what about things that are in your control? When COVID-19 first started earlier this year, it was clear that if I stayed home, stayed away from people, got deliveries versus going shopping myself, etc., I’d have a very low likelihood of contracting COVID-19. I’m very fortunate that I have a job that allows me to work from home, complete control over my home environment, and no responsibilities such as children right now, where their wellbeing would also be a key factor in my decisions. So yes, while I knew I was in control, I didn’t know what great expense that would come at, nor that it would last so long.

Photo credit: Caroline Levens

I’ll admit I had a heightened sense of concern early on in COVID-19. I bought an N95 before COVID-19 was even known to be spreading in the US and was self-quarantined by the first week of March. And up until recently, I felt my COVID-19 experience was probably one collectively shared by nearly everyone – of course, everyone had cabin fever, and COVID had affected their plans, friendships and relationships in unexpected and unfortunate ways.

Then COVID fatigue seemingly blanketed the nation – myself included. The mentality that “well, if this is seemingly going to go on forever, I’ve got to start living my life again. I can’t stay inside forever. The death rate is extremely low anyway. I’d probably be fine. Or whatever I’d experience has got to be better than a year or so cooped up inside.”

And just like that, for the very first time in my life, type 1 felt like it was limiting what I could do. My thoughts and COVID-19 exhaustion was shared with mass America, but I didn’t have the privilege to act on them. And somehow it made it much harder when I felt like the only one still sheltering in place – which, of course, I’m not. There are millions of high-risk individuals – and loved ones of high-risk individuals – experiencing the same thing. But it sure doesn’t help seeing pictures of friends on social media living a life I long for so much right now. I recognize that it is my decision how to respond to COVID-19, but to me, it feels practically synonymous to my immune system declining all invites on my behalf.

To be fair, there are many type 1’s who have largely resumed their normal lives, though many of them are children and have a lower likelihood of experiencing severe complications, or are in lower-risk areas. But at this point in COVID-19 – I personally feel I can’t let up. Health is one of my very top personal priorities, and the truth is, I don’t know what kind of experience I’d have if I were to contract COVID-19, both short term and long term. And to clarify, it’s not just type 1 that has me on my guard – I’m also immunocompromised and have several other autoimmune diseases.

There’s a heavy emotional toll that comes with being part of a high-risk community. Early on in the pandemic, I questioned where type 1 fit in the picture when they said diabetes was a high-risk factor. It was also known that obesity was a huge risk factor, so I was skeptical if it was diabetes in itself that was the risk or intertwined with the risk posed by obesity, which is strongly correlated to type 2. Then came a study out of the UK with thousands of diabetics that showed actually type 1s had significantly higher death rates than type 2s. I personally lost a type 1 friend from my teens, and he was 26, one year younger than me. I’ve read about countless stories that range from minor cold-like symptoms to months of enduring fatigue to permanent lung damage and more.

Riding out sheltering in place is hard – but if I were to have a severe case of COVID-19 that damaged my health, I’d never be able to forgive myself. So I continue doing the best I can. And no doubt it’s come with sacrifices – I couldn’t attend my grandma’s funeral, it put a strain on a relationship I was in, l didn’t get to say a proper goodbye to friends who moved away for good, and even though I’m a total homebody and introvert at heart, I’ve experienced loneliness for the first time.

I know long-term this is just another part of the type 1 journey in life. The level of gratitude I’ll have for the most simple things will be immeasurable post-COVID-19… hugging a grandparent, going grocery shopping, having lunch with a friend. With any luck, I won’t have any future experiences where I feel type 1 is stopping me again, but if I do, I’ll be better equipped to handle it.

So why am I writing this? There’s been so much criticism towards those still staying home, those still wearing masks in outdoor settings, those not sending their children back to school, and it’s really uncalled for and disrespectful in my opinion. You have no idea what someone else is going through, and many of the highest-risk conditions are invisible.

In summary, if you’re not high-risk and are comfortable resuming your normal life, recognize that’s a privilege many aren’t fortunate enough to have. For millions of people at home for one reason or another – be it type 1, older family members, or other medical conditions – we’re still riding out an isolating quarantine, compounded by the stressor of uncertainty and the unknown timeline. So keep in mind that everyone is experiencing COVID-19 differently, and trust that other people know what’s best for them, just as you know what’s best for you. Your pandemic may have “ended,” but others still have to be as on guard as they were months back — all while not knowing if it’s the beginning, middle or end of this wild ride.

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