Sharing the Journey: Staying Informed on COVID & Safety Measures

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:

There’s a lot of information about COVID-19 that can make it more difficult to understand risks, which can make it more difficult for people with lupus to protect themselves from the virus. What are you doing to ensure that you are getting the best and most up-to-date information about lupus and public health safety measures?

Unfortunately, some typical indications of increased lupus activity overlap with the symptoms of COVID-19 virus: fever, fatigue, body aches, headache. Lupus flare or virus? As statewide phase plans are put into place for re-opening, many of us living with lupus do not have the luxury of easing up on our standard of vigilance. Information posted on both my city and county websites are generally a good starting point for comparing testing results, directives on face coverings, allowable gathering size, social distancing, and businesses that may open. Links to the CDC for guidance are also provided on both sites. Since I get infusions every 4 weeks, I mostly rely on first-hand advice from my rheumatologist and infusion nurse. And, of course, I often check lupus.org to keep up on the latest developments that are of importance to the lupus community. Make an informed decision that feels right for yourself. Just because a certain activity or establishment is now deemed as “allowable” does not mean it’s “deemed safe” for me, especially if it causes anxiety and concern. – Rob 

My doctors (both primary care and rheumatology) have remained in close contact with me since the beginning of March. I follow their guidance, and pay special attention to CDC recommendations, local news, and the Lupus Foundation of America’s social media pages. – Kayla 

There are so many news articles and headlines all around COVID-19; it can become overwhelming as a lupus patient to find the specific information that can help me as my body fights lupus. I have three main places I go to daily to keep me informed. I go to the CDC website, LFA Resources/website and my hospital where I am seen virtually. If I need to read further - I do.  These three resources have not steered me wrong and I am so appreciative of them. – Angel 

I mainly get information from the CDC, national news, and my doctors. I’m doing what I feel comfortable with and making decisions based on the limited information I get from the sources just mentioned. – Leslie

Ensuring that you have the correct information regarding COVID-19 and your risks while having lupus is super important. I personally had a long discussion with my rheumatologist regarding this issue, and what I could do to help protect myself. I also use reputable resources like the LFA to read about current news and studies. I think it is important to avoid getting information on social media, since it can be so biased one way or the other. Having an autoimmune disease makes it so much more important to get the facts straight and protect yourself. – Roxi

When COVID-19 made its appearance, I think that I did what a lot of people did. I got mentally overwhelmed from information and public health safety guidelines that were being given out about the virus. I would find myself having panic attacks simply turning on my TV or scrolling through my social media. There were and are so many different opinions that everyone is entitled to during these times, but I had to find the correct resource for myself personally. Being in the at-risk population means that we don’t need to be “playing with fire.” We have to do what is best for our health from the get go. I found all the information, resources, public health safety guidelines, and support that I needed during this troubling time through LFA and the LFA Florida Chapter. Not only is their website loaded with links for us, but they post almost daily on social media. They also offer virtual support groups during this time which can also be a great way to talk to others about information on the virus and how they are getting through it. I feel comfortable and one hundred percent sure that they have the most accurate and beneficial information for me to fight my way through this pandemic while battling my lupus. – Becca  

For the past several months, so much information has been circulated regarding the coronavirus pandemic, and updates are constantly evolving. With limited information, it can be a bit overwhelming having to monitor what is happening in your area while also managing lupus daily, which may include differentiating your lupus flares and symptoms from the virus. That’s why it’s important to lean on trusted, relevant sources and remain up-to-date with that information. With the Lupus Foundation of America, you’re not alone. 

In times of uncertainty, the LFA is sharing the most updated health information on lupus and the coronavirus in the National Resource Center on Lupus and COVID-19 page, including tips for protecting yourself as restrictions are lifted and frequently asked questions regarding COVID-19 and our Health Educators are available to help answer questions, provide support or direct you to further information. It’s also important to pay attention to what is happening in your community and have conversations with your doctor regarding what precautions you should take.