This month an article came out in IG Living Magazine that I’d written months prior to COVID-19 coming on the scene. It was about my experiences as a Primary Immune Deficiency Disease Patient (A rare disease that increases my susceptibility to infection) and how I underwent a quarantine experiment to see if I could improve my immunoglobulin levels in preparation for my journey of trying to conceive. It was a novel approach to an even more novel problem: if a girl with girl-in-a-bubble-disease voluntarily goes in a bubble– does she get better?
Here’s my story as it appears in the April issue of IG Living.
Is It Possible to Take a Break from Your Disease? An Experiment of Extreme Measures
By Ilana Jacqueline
After years of really, and I mean REALLY struggling with managing my immune deficiency I’d finally had enough. At the start of 2019, I was exhausted. I couldn’t remember what life was like without taking antibiotics every day—with all of their side-effects, and yet never not being buried under the weight of one new infection or another. It was weighing more on my mental health than my physical one. I had forgotten what it felt like to be comfortable in my own body. I just wanted to take a step back from all of it.
So, I did.
I went on a drastic lockdown. I’m talking a very intentional quarantine from everyone and everything that added non-essential risk to my daily life. I was already working from home, so not having a daily commute or public office to interact with people in was taken care of. I went off the grid with friends and family, only seeing my mom and husband.
I used apps to order food and groceries to avoid crowds at stores. Did all my shopping for clothes on Amazon. If I had to go to a store for anything, I did my best to go at “quiet” times at 24-hour stores. I switched to a pharmacy with a drive-thru.
I cancelled all non-essential doctor appointments. If I couldn’t avoid a waiting room, I’d hand the administrative assistant my phone number and tell them to call me when they were ready for me. I walked empty hallways to avoid sitting next to people.
All in all, avoiding the entire world wasn’t that hard. Hell, it was heaps easier than living with a constant head cold.
At the end of 2019, I’d gone my first full year without a hospitalization.
And what did it cost?
Literally all of my friendships. I wish I could say that I stayed in contact with even one friend during my entire quarantine, but I didn’t. I didn’t go to parties. Didn’t celebrate girlfriend’s birthdays. Didn’t spend nights out. It was lonely and there were some days I wondered whether or not it was worth it, but I just kept reminding myself that this season of my life wasn’t forever—and that my body needed the break.
A lot of money. Think staying home is done on the cheap? Not in today’s world. I paid through the nose to tip delivery drivers, subscribe to delivery services and pay shipping fees for things that wouldn’t have cost me half as much to pick up on my own.
My social skills. Now that I’m reemerging into society, I feel the most awkward I’ve ever felt having conversations with people. I had a LOT of alone time. Even though I had plenty of virtual meetings for work, I lost all of the ease I used to have in talking to strangers. I’m having to re-learn how to be myself around other people.
What did I gain?
I caught up on my medical debt. That’s right! The hospital even wrote me a check for accidently overcharging my tab after I paid off the last of my hospital stays. Without incurring any new visits, I even had their billing office perplexed!
I reduced my medication. I was able to stop taking antibiotics completely, which meant I was able to take less medication for the damage they did to my stomach. In peacetime, I also decided it was safe to stop taking some of my pain medications.
Appreciation. For so many things. My body’s ability to heal. My ingenuity when it came to finding creative ways to avoid risk. My husband and mother who helped me do the things I couldn’t.
I also gained a brand new appreciation for how much we do actually need people in our lives, no matter how much of a risk they might present.
While I don’t think a quarantine is a great experiment for everyone, it is possible with planning and perseverance and it can do wonders to give your immune system a rest!
Moral of the story: While we are now ALL under quarantine, we’re not the first indoor adventurers and we won’t be the last. Also, it will be SUPER to no longer have to give a lengthy explanation about my rare illness and to simply be able to say, “remember that time we all stayed inside to avoid getting that terrible virus? Yeah, that’s been my life this whole time.”