Sharing the Journey: Unexpected Changes to Your Routine

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

The coronavirus (COVID-19) pandemic has brought about major changes to our everyday life, from working remotely to using online resources to keep us in contact with our loved ones. What changes have you had to make during the pandemic for your health and safety? How did you cope with these changes?

The pandemic changed so much, and I’ve changed with it. Now, I truly utilize my electronic devices for just about everything, and I have only gone out when absolutely necessary. To avoid having to go to the grocery store, my family and I utilize delivery apps to bring us groceries and food. We have had to keep cleaning supplies at the front door to safely wipe things off as they enter the house, as well as cleaning our hands before touching anything else. I am also utilizing the telehealth option – I have had multiple doctor appointments via the phone. This pandemic continues to change our normal, but one thing we as lupus warriors have to do is always be ready for variable change, willing to regroup, and make proper adjustments to our everyday lives. – Angel 

The hardest part about this pandemic for me is everyone's different view on its severity and its solution. My mother has always said, "You manage your own care," and I think that is vitally true now. I work in an environment currently where I interact with a lot of people and I am exposed to a lot of germs. Not many people I work with wear masks and there is very limited social distancing. This puts me at a higher risk of contracting COVID-19. So, when one of my co-workers contracted the virus, I found a way to go get tested myself. I took control of my health care and got the help I needed. I also went to my boss and talked about potential options to help me limit my exposure to others. I think people with lupus are tasked with fighting for what they need and finding a way to get that. That is how I am approaching these new, unprecedented times. – Becca

I have been working from home, but my husband's job cannot be done remotely. Every day, when he gets home from work, he changes clothes in the garage. We wear different shoes that we leave in the garage when we go out anywhere in public. This may seem extreme – I don't know anyone else doing the shoe thing – but it has worked for us. That has been one major change to our daily routine. – Leslie

Because of COVID-19, I had to adjust to doing online teaching instead of in-person teaching. I also had to change the way I see my doctors. I have virtual calls unless I need to see them in-person. I’ve become a major neat freak since the pandemic, so I am always disinfecting and cleaning everything up. – Kyra

Frequent hand washing, having little bottles of hand-sanitizer always at the ready, keeping a stash of anti-bacterial wipes in the car, carrying a folded-up paper towel in your pocket to open doors, wearing a face mask to minimize sensitivity to odors, monitoring temperature, graciously declining invitations to large social activities because of your aversion to crowds – these are my coping mechanisms to living life with lupus. Now, with the COVID-19 pandemic, it seems the rest of the world is just catching up.  – Robert 
 

The coronavirus (COVID-19) pandemic has profoundly changed people’s every day lives but perhaps none more visibly than those living with chronic diseases like lupus. Because the threat of infection is much higher and the consequences for infection can be much greater for those with an autoimmune disease, the precautions needed to be taken against COVID-19 are more extreme.

In an effort to assist you in making important decisions for your health and safety, the Lupus Foundation of America has created an online resource center filled with updating information about COVID-19 and how it impacts those living with lupus. From frequently asked questions and answers about COVID-19 and how the pandemic impacts those taking hydroxychloroquine, to steps on how to prevent contracting the virus, to ways to manage stress and anxiety during the pandemic, the resource center holds important information to help guide your efforts in creating a new normal in the pandemic.