It’s weird seeing some of the parallels from my life when I suddenly got sick with a chronic, debilitating illness and the pandemic. People are describing emotions that the COVID-19 quarantine is bringing out that I felt when I suddenly got sick six years ago. I’ve been handling each step of the way a little better than you would expect from someone who does deal with anxiety, but after thinking about it a little, I attribute a lot of that to having experienced something that was, emotionally, kind of similar. Chronically ill people were prepared for this in a way that the regular population maybe wasn’t as much. Here are some thoughts I’ve had, both in isolating at home now, and back when I first got sick.
What would my life look like if it wasn’t for health concerns?
Back in the day I thought about this a lot because I was forced to give up my dream of continuing to work at my dream job. I had just completed the greatest internship of all time at Seventeen magazine in New York City, and was so excited to find a cozy (some might call it cramped) apartment to move to permanently. Instead of continuing on a normal path, though, I began fighting to have any taste of normalcy I could get. I got incredibly sick overnight and suddenly went from being a healthy 22-year-old to not being able to sit or stand without feeling dizzy or passing out. I was couch bound with the exception of going to the cardiologist or physical therapy to figure out how to begin my road to recovery.
Now I sometimes think about what the world would be like without all the corona craziness that’s going on. I would be able to see all of my friends and family, I would be able to go on normal date nights, and I would be able to continue to explore the world. I try to feel content being at home and remind myself how blessed I am to have my health and a few loved ones here with me. This time around, I’m just home bound — not tethered to the couch because of a lack of health. I’m trying to appreciate the fact that I am healthy during the pandemic, push myself to do yoga in the basement, and realize that things could be a whole lot worse. Not having a working body makes you feel so much more trapped than a comfortable home filled with food and an Internet connection.
This isn’t fair.
No, it’s not. I’ve learned a lot of things in life aren’t fair. It wasn’t fair that I had secured my dream job, only to be hit over the head with an illness that knocked me on my butt. I was angry because I had always taken good care of myself. I ran several days a week, played intramural sports throughout college, and ate well despite having a good enough metabolism not to. I never drank excessively and wasn’t really risky with anything that had to do with my health. I didn’t pay a crazy amount of attention to it because I didn’t have to, but I actually did a good job maintaining a very healthy lifestyle. I felt so frustrated that I had done everything right and ended up being the one person I knew who had a crazy, weird health problem happen to them. It didn’t feel real, but being sick was my new reality.
We need to have a new normal with the reality of the coronavirus pandemic. It sucks not being able to do our favorite activities or see friends and family, but taking up new hobbies and finding the bright side of things is so important for our mental health.
Having a chronic illness made me realize that even though there may be unfair things that happen to you that suck, there is always something to be joyful for. Back then I got to spend quality time with friends and family. I learned that I am a lot tougher than I ever thought, and I learned that I need to be thankful for every single thing I am able to do, because some people aren’t as lucky as me. I am also convinced that I would have never met my husband, had I not gotten sick with POTS. The only reason I wasn’t in New York was because I had to stay in the area, and who knows what my life would look like now if I had been there instead. These are all blessings that came from the hardest thing that ever happened to me.
When will this end?
When I got sick with POTS I was told so many different things. “This is your life now, you’re not getting better” was the first thing a nurse told me. Later I was reassured that a majority of people who get POTS when they are young get a whole lot better in time. Since POTS hasn’t been studied as long as other illnesses, there weren’t always answers to my questions, but luckily through lots of physical therapy, lifestyle changes, and time, I’ve made leaps and bounds and know how to manage my health. I have far, far less bad days than good ones now.
It’s absolutely devastating having your life turn upside down and your routine completely trashed. Anyone with a chronic illness will tell you this. We’ll also be there to reassure you, though, that just because things change drastically doesn’t mean they’re forever — but perhaps more important, it doesn’t mean you won’t have joy in your life or that you’re doomed to feeling the way you do today. People are adaptable and learn to adjust to their circumstances. If you had told me everything I was about to go through right before I got sick, I would have had an absolute meltdown. I wouldn’t have been able to deal with knowing I wouldn’t be able to merely stand up without passing out, but you know what? I got through it. I somehow managed being genuinely happy the years I couldn’t even stand up or have a single normal day. Did I mention during this time I couldn’t go to restaurants, I couldn’t shop for my own groceries, and I even had to be taken home from the movie theater because the room was violently spinning around me, just from sitting upright? Do you see a few parallels between being chronically ill and being stuck at home because of COVID-19? The biggest difference for me is the fact that this time around I can actually move around and be more active, and don’t feel sick all the freaking time.
Take it one day at a time.
The easiest way to do anything difficult is take it one day at a time. When I got sick, I didn’t let myself think about what it would be like in one, five, or ten years if I still couldn’t get out of the house and do anything. Instead, I found things to look forward to every day, even if it was just a little TV show or eating one of my favorite foods. Now, under the stay-at-home order, I don’t think about how long it will be until I can see family and friends or go out to a restaurant again. I look for other things to occupy my mind, rather than spiraling about things I have no control over. This is so much easier said than done and if you slip up you need to be gentle with yourself, but there’s no shame in asking for help if you need it. Therapy can be an amazing way to help control anxiety, and even in these strange times people are doing sessions online or over the phone. Learning to be present and appreciate what you do have can be really hard in the face of adversity, but it’s the most rewarding thing you can learn how to do.
It’s okay to miss your old life.
Just don’t make it out to be something it wasn’t. I had to remind myself that even though I lost a working body, life hadn’t been all sunshine and rainbows before I got sick. I loved to run, but going for ten miles at a time was not a walk in the park. My lungs hurt, my legs burned, and I have always gotten bad shin splints from running. Now that I can’t, I often think about how much I loved it, but running isn’t always easy. Our lives in this weird little quarantine bubble have some bright spots we’ll miss. Whether it’s having your family at home with you, being able to binge on all the reality TV you didn’t have time to watch before, or being able to work in your pajamas, there are things that are good about the present time. We miss so much that we used to do on a regular basis or took for granted, but one day we’ll be back to our normal lives and look back at this as a little blip in our lives.
It’s also okay to be scared.
Losing every sense of normalcy is freaking hard. Find things to look forward to in your new life, and remember that so much of this is temporary. The pandemic isn’t going to last forever, and one day we will be out doing our own grocery shopping and going into work again. It’s so weird that we are all facing this uncertainty at once, but none of us are truly alone, and I think just about everyone has had a pit in their stomach at one point or another about how this is affecting each and every one of us. It’s normal to feel uncomfortable about something as big as this, but doing your best to focus on what you can control — and letting go of the things you can’t — does make the weight feel a little less of a burden.
And finally, circumstances change.
I am so thankful to have the health I do today. I get frustrated and angry when I try to go for a run and my heart can’t handle it, but I am so lucky to be able to go for walks without feeling dizzy, type on my computer without having terrible muscle pain, and I can cook now without worrying about my elbows or arms hurting — even if there is a lot of stirring involved. Things are constantly changing, and it is no different for the pandemic. Incredible minds are working to find solutions to this every single day, and I am confident that people are going to find ways for our lives to slowly gain a sense of normalcy.
I honestly don’t remember a lot of what life before chronic illness was like, in the sense that it’s difficult for me to feel like POTS was ever not here. I have to do a lot to manage my symptoms now, but everything has become such habit at this point that it doesn’t feel weird putting little electrolyte and sodium tablets in my water every time I go out to eat and I’m used to doing nerve glides and mobility work at the first sign of stiffness. This all feels so normal to me, so even if we do have some things that become a new normal, we’ll adjust. People are much more resilient and adaptable than we give ourselves credit for. I am not particularly strong or tough, and I really don’t like change. If I can go through years of being sick and dealing with a million changes, absolutely anyone can. We may not all be in the same boat, but we are all in this together, and don’t ever hesitate to reach out to others if you need help. Many people are looking for ways to help others, but just don’t know how.