I’ve written before about how I like to stay busy. In addition to managing my rheumatoid arthritis (RA), a typical week for me would often involve writing, volunteering at my church, connecting with other RA patients in person or online, and caring for my husband and son. For me, distraction has always been an effective way to manage my RA symptoms—the more I fill my schedule, the less time there is to focus on my RA pain.

Like many others, I found my daily routine abruptly upended by the spread of COVID-19. Having RA puts me at higher risk for complications, so my family and I have had to take new precautions to protect ourselves from exposure. Unfortunately, this meant scaling back on many of the social activities we previously enjoyed and not being around our family and friends.

In the beginning, this was a struggle. While I was grateful to be with my husband and son, I still felt lonely and isolated when I thought about having to stay away from family and friends. Staying at home meant I no longer had my regular therapeutic outlets, which made it increasingly difficult to distract myself from the joint pain and fatigue due to my RA.

Despite the adjustment, I’ve found new ways to cope and even learned a few surprising things about myself along the way. The following tips have helped me find a positive balance amid the disruption of the past year, and I hope they help you too!

Find New Ways to Make Time Feel Meaningful

Being busy has always been one of the best ways for me to distract myself and gain fulfillment. Being on the go and surrounding myself with other people is usually a great way to take my mind off my RA. Of course, this became much more challenging once stay-at-home orders and social distancing guidelines went into effect.

To help fill my days, I immediately looked for projects I could tackle around the house. I challenged myself to learn new skills and even joined in on the bread-baking craze that was becoming popular at the time. It felt good to be productive and find new things to do in spite of my RA.

I also turned to new creative outlets. Whenever my son and I grew tired of being stuck inside, we’d grab our art supplies and head outside to paint together. The weather was beautiful, and I quickly began to look forward to spending that quality time together.

Do What’s Right for Your Health and Well-Being

As someone who used to socialize frequently, being away from many of the people I love hasn’t been easy. Still, I know being extra cautious and minimizing my family’s exposure is the right decision based on my risk level.

At the beginning of the pandemic, people were very understanding about this; most were wearing masks, social distancing, and staying home as much as possible. Yet as time goes by, I find that many are starting to relax their stance on safety measures, making it harder and harder to justify my boundaries to certain people in my life.

Communication has been more critical than ever. I’ve had to have some challenging conversations with relatives and friends about why my family is avoiding gatherings outside our home and why we can’t interact with people who haven’t been tested. While we may not always see eye to eye on these matters, I’ve found that being honest and transparent about our situation usually leads to a mutual understanding. I find when I’m non-judgmental of their desire to engage in social activities, they are more understanding of my desire to stay home.

Unfortunately, many RA patients and advocates seem to be navigating similar talks with their loved ones right now. The best advice I have is to be patient and understanding. Sometimes, the person questioning your boundaries may be reacting from a place of fear. They could be having a hard time, too, so try to respect their decisions without taking things too personally. People living with RA know that empathy is essential to maintaining relationships—and works best when it’s shared.

Turn to Your Online Community

When you have a progressive and disabling disease, it can be easy to stick to your online community and not venture out to attend in-person support groups. Before the pandemic, I would always advise RA patients to have a support system in place on- and offline and to prioritize human connection.

Now that in-person interaction is not an option for many of us, I realize the power of our online community of RA patients and advocates. I am grateful for the individuals who log on each day to share the challenges they’re facing in managing their symptoms under these new conditions because it makes me feel less alone.

The RA patients I’ve chatted with have gone above and beyond to support each other during this pandemic. We even schedule time to talk to each other on the phone. Sometimes you just need to hear the voice of someone who understands what you’re going through.

Find a Rheumatologist You Trust and Connect With

Navigating the challenges of this pandemic has deepened the relationship I have with my doctor.

While all of my appointments used to be in person, we primarily check in with each other via telehealth platforms now. At first, it felt strange to be showing my symptoms over the phone, but we just laughed about how awkward it was and decided to roll with it. I think that’s the best attitude to have. We’ve both adjusted to the learning curve and make the most out of these appointments. We’re doing the best we can under these circumstances and figuring it out together.

My advice to anyone living with RA—before the pandemic and now—is to find a rheumatologist who understands that you are a vital part of your healthcare team. Find a doctor you can really build trust with.

While living with RA hasn't changed who I am as a person, I believe it's helped me prepare to adapt to many of this year's challenges. Don't be afraid to advocate for your health, set boundaries that feel right for you, and reach out to your community when you need extra support.

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