My Desperate Plea

I’m about to give you a little insight into my life as someone with a chronic illness in hopes that it will contribute to a greater message. I hesitate to do this because the reality of my health is something that I’ve kept fairly private publicly unless something felt uniquely meaningful to share. That doesn’t mean I’m not open about it or that I don’t appreciate when people ask questions – I am and I do. However, I’m very selective and intentional with what I share and who I share what with. 

I have never wanted my condition to be a primary defining characteristic of mine and I’ve also never wanted it to dictate my experience in life. My story as it relates to my health isn’t pity-able or tragic – it’s just a part of an otherwise full and beautiful life. And, at times, there’s even beauty in it. 

All this to say, I’m putting information I might not ordinarily put out there, out there to shine a light on what it means to be “vulnerable” during this time and how we can do our parts to not only protect ourselves from this virus, but also (and more importantly) look outside of ourselves, our conspiracies, and our preconceived notions to recognize that we aren’t the only ones hurting and we actually have practical opportunities to serve others in need. 

When I was nine years old, I was diagnosed with Type 1 Diabetes after months of weight loss, intense thirst, and severe illness. I spent a couple of days in the ICU and an additional couple of days a few floors up in the hospital and then I was sent home. I dealt with a challenging and anxiety-ridden transition back into the new school I had just started at prior to my sickness. Ultimately, things settled and the only difference between my day and the day of any of my classmates was that I had a couple of more visits to the nurse’s office than them and had to stick a few more needles in me.

When I was in 5th grade, my classmates and I participated in a bike safety course. The course culminated in a field trip where we got to ride our bikes around town and show off our new skills. I was so excited, but that excitement quickly deflated when my substitute teacher told me that I couldn’t ride with my friends and instead would have to ride with her in the slower-paced group because of my health. I was hurt and shocked that anyone would recognize difference between me and the friends that I so desperately wanted to cruise around town with. 

When I was in sixth grade and beyond, I started getting sick pretty consistently. Colds and flus would hit me harder. I’d regularly deal with random infections that kept me out of school for days at a time. Each time I had to return to school, I felt anxious, vulnerable, and shameful knowing that I couldn’t hide the impact of my disease from my peers or teachers as well as I wanted to.

The worst came at the beginning of my freshman year when I was diagnosed with pneumonia after a solid month of extreme fatigue. I missed my first two weeks of high school and spent an additional month or more recovering from the toll pneumonia had taken on my body. I was absent for 36 days of school that year. My anxiety increased drastically and I had my first taste of depression. 

This pattern of illness continued throughout my high school career. If I got sick, which I did frequently, I would be out for at least a week at a time and recovering for at least a week more. Though it was better at times and worse at others, it was nonetheless a fear and a risk I experienced every day. If I had gone a month without missing a day of school, then it was a massive win. 

These were not the only moments where I hung my head low recognizing that my condition was exposing a difference that I didn’t want it to. Throughout grade school, I missed field trips because of doctor’s appointments. I had to make special arrangements with school personnel to make sure I was receiving the medical care that I needed. I had to leave class early or arrive late because of trips to the nurse’s office. I had to sit out of basketball practices because of a low blood sugar. It was constant. 

And though, by the grace of God, my immune system has gotten stronger since high school, the pain of illness still rests heavily in my soul and the consistency of medical attention lives on in my life even when that isn’t obvious. 

What I’ve recognized recently is that in my attempt over the years not to be “normal” – I own, accept, and appreciate my condition – but rather to minimize perceived differences between me and others, that I’ve actually made it so that people don’t understand the impact that this disease has on my life and the lives of so many others. 

I don’t think people realize that I operate on a calendar of blood sugar checks, pump set changes, sensor insertions, and doctors’ appointments. I don’t think people realize that low blood sugar can actually be life-threatening for me – that sometimes going to sleep is a scary thing because my body could act in such a way that prevents me from waking up. I don’t think people realize that a prolonged period of high blood sugar can leave me immobile on the couch.

And let me note, because the misconceptions of Type 1 Diabetes still run deep, that my medical experiences, challenges, or the fact that I’m immunocompromised have absolutely nothing to do with lifestyle-related factors. I have an autoimmune disease, y’all. 

This is my story, but I’m just one person in millions of stories of people who feel unseen, unheard, or invalidated and are dealing with their own invisible or visible illness. It isn’t about me, but I hope in talking about me it can open your eyes to others. 

My heart aches for the nine-year-olds with T1D or some other chronic condition who have had to watch as their friends get to play together or go back to school while they sit on the sidelines and I cry for the young adults who hear this damaging rhetoric that this virus only impacts the elderly. 

So here’s where I get to the point. My whole life, people have expressed care and concern about my condition. They’ve asked how I’m doing. They’ve prayed for me. They’ve shown their support and respect and more. And I’ve appreciated all of it. 

Well, most of it. Sometimes well-intentioned people make utterly ridiculous comments, but I digress. 

However, the most disappointing thing over the past several months as we’ve navigated this pandemic is that when push comes to shove so many people don’t actually care. They choose not to act in love – they just want to speak in it. 

People who have known me since before I had this disease who have supported me, donated to causes, and shared encouraging words now can’t be bothered to wear a mask. People who prayed for me when I was in the hospital now proudly hold large social gatherings. People who I consider family, who know that I would not ask for something unless I meant it, still choose to reject my pleas for protocol adherence because surely this must all be blown out of proportion.

People who preach humility have now pridefully and blindly established themselves as experts. 

And this hurts me. Deeply.

Hi, I’m Abbey. I’m a young, excitable, energetic, relational person who also happens to have a lifelong chronic illness. Odds are if you’re reading this you care about me or someone in my world. 

Will you please show me that you care? Will you wear a mask? Will you practice social distancing? Will you sacrifice by not going home for the holidays (if you can help it) so that those like me don’t have to continue sacrificing for your mistakes? 

To be quite frank, I don’t care if it infringes on your Constitutional rights. Fine, then. Don’t wear a mask because of the Constitution. Wear a mask and social distance because you have free will and it is the right thing to do. Wear a mask and social distance because you claim to care about other people. Heck, if individualism is your thing – wear a mask and social distance for yourself. If there’s one thing I know, it’s that young, old, healthy, or sick – this virus does not discriminate. 

I’m not only speaking to those who differ politically from me. I’m speaking to those who have ever used the statement “I’m young and healthy, so it probably wouldn’t be that bad if I got it” or some derivative. You, too, by holding your gatherings, by justifying your lackluster safety procedures are also contributing to this. No number of social media postings about wearing a mask can erase your own actions.

Ultimately, this isn’t even about coronavirus. It’s about common freaking sense. If you had any chance of having the flu, would you go breathe in people’s faces? I don’t think so. If you wanted to learn math, would you invent your own methods because they felt more in line with your values? I don’t think so. If you knew that by spreading the virus you would only be contributing to viral mutations that would keep us in this mess longer, would you make the same decisions? I hope not.

In saying all of this, I am not dismissing for one second the hardships that all of us have had to face. My story is nowhere near as challenging as so many others and the only reason I am sharing it is to offer some perspective on not just my experience, but the experiences of others.  

I am also not dismissing the devastating impacts that this virus has had on our economy, small businesses, financial security, mental health, physical health, employment status, family paradigm, stress manifestations, etc. Trust me when I say, I am with you. And I believe in balance. I’m not advocating for a lockdown. I am advocating for adherence.

I am asking you to get creative. This past year, I have followed the recommended protocols and procedures strictly. And yet, I have still found ways to spend time with my family. I have still been connected with my church. Though I choose to participate in online services, they have still met in person, when allowed – but they have done so wisely and safely. I’ve still gotten together in person for takeout picnic lunches with my friends. I’ve still supported the small businesses in my community. I’ve created quarantine pods so I can still visit with a couple of those people closest to me. I’ve learned how to edit videos so that family traditions like sharing what we’re thankful for on Thanksgiving can live on. If I can do it, so can you.

Is it perfect? Absolutely not. At another time I’ll speak of the depression that has recently crept its way back into my life. But is it temporary? Yes. 

I think it’s clear from my writing that I’m hurt and I’m disappointed and I’m even angry. But those feelings do not come at the cost of relationships. I’m working on being less judgmental of people who choose differently than I do. I’m working, though frequently imperfectly, on listening to those whose experience this year has been different. However, when you love someone and you are in relationship with them or share communities with them, sometimes you have to call them out. That is what I’m doing here. My hope is that maybe, maybe, maybe sharing my story won’t fall on deaf ears. Perhaps it can bring some of you into a new reality, one that I believe is more inclusive. 

And for those of you who are more science-minded and think stories are great, but where is the proof? The proof is in the people in my life who have had family members who are severely ill or even die from this virus. The proof is in the way that our current approach to herd immunity (meaning, doing it the “natural” way) is discriminatory, isolating, and ineffective. The proof is in the fact that non-partisan experts are deeply worried. If you’d like more than that, I’d be happy to share with you some studies. 

I know we are all tired of talking about this, myself so completely included. We’re tired of this year. We want it all to be over. But please honor my vulnerability in sharing all of this with you. If you love me or your neighbor or your family or yourself, that might mean making sacrifices. Make these small sacrifices with me without sacrificing relationship or connection.