Before the pandemic, I was actively involved in my community in Minneapolis, regularly doing in-person volunteer work at a local community radio station, museums, cultural organizations and other nonprofits. I was also working as a substitute teacher, in addition to other part-time jobs, and enjoying my independence. While there were times when my rheumatoid arthritis (RA) felt lonely and isolating, these moments were often balanced by the fact that I had many other things to look forward to.
COVID-19 changed all of that. As an extrovert, the social isolation of the pandemic has been difficult for me, especially because I’m considered high-risk. I’ve also been quarantining with my parents, including my dad, who is at high-risk due to his age and the radiation treatments he received in the past for his prostate cancer, which is currently stable. Seemingly overnight, my social network shrank to only a tiny handful of people.
These past months have been a rollercoaster ride for my emotional wellbeing, and I knew it was time to make a change. It hasn’t been easy, but I’ve included the steps I’ve been taking to proactively shift to a more positive mindset and reengage with my community and support system again. I hope you find these helpful too!
“Since pandemic restrictions prevented my family and friends from being there with me in person . . . added support from someone who knew firsthand what I was going through meant so much to me.”
Set Specific Engagement Goals
When I’m feeling overwhelmed, it helps me to start by setting small, measurable goals to act as my roadmap moving forward. I knew I wanted to become more active in the RA patient community, so I considered how to break this goal down into manageable steps.
First, I decided to connect with new patients through my RA blog and social media accounts. I also rejoined an organization that promotes collaboration between patients, health professionals and caregivers, and an advocacy organization for clinical trial research. Now, I can check in and chart my progress over the coming months. I’m really looking forward to expanding my RA and patient advocacy work.
Look for Silver Linings
In a year full of setbacks and challenges, focusing on the positives is easier said than done. Still, I’m trying to find small victories wherever I can, especially when it comes to managing my RA.
I’ve surprisingly discovered that I really like doing virtual video visits with my healthcare providers. I feel more at ease, and I don’t have to get stressed out over rushing to appointments, battling traffic or finding a parking spot.
I hope virtual visits will continue to be an option for patients—especially for those of us living with chronic inflammatory illnesses. It’s a great way to feel connected and it’s physically easier than traveling to the clinic.
Ask for Help When You Need It
Like many high-risk individuals during this pandemic, I’ve struggled with my emotional wellbeing.
After a conversation with my primary care provider over the phone one day, he recommended that I see a psychiatrist. I felt reluctant at first, but I scheduled an appointment and am so glad I did. The new therapy options we’ve explored are already making a difference—such as group therapy and dialectical behavior therapy (DBT).
I knew that without getting emotional wellbeing support, my mind and body would suffer. If you’re in a similar situation, don’t be afraid to ask for the help you need.
Take Small Steps Toward Joy
I love photography, but I’d been having difficulty getting motivated and staying focused long enough to take many photos. Toward the end of last summer, I ventured out and brought my camera along.
I slowly wandered around and met and talked with lots of people—safely, of course, with masks and social distancing. As I took pictures and exchanged contact information to send people their photos, I began to feel like I was connected to my community again for the first time in a while.
I was glad to have my camera to capture the moment and connect with my neighbors that day. Photography brings me great joy, and I know I need to find the time to keep doing it.
Remember: Online Friends Can Be Real Friends
Never underestimate the valuable emotional support that can come from talking online with others living with RA. Last summer, an RA friend who lives in Georgia ended up being one of the few people to help me feel less alone during a particularly challenging time.
She and I began chatting online more and turning to each other for support throughout the pandemic. During one conversation, we realized we were scheduled for surgeries on the same day. Although we live in different states and would be in separate hospitals, we chatted online for a long time the night before and checked in on each other as we recovered. Since pandemic restrictions prevented my family and friends from being there with me in person, having the added support from someone who knew firsthand what I was going through meant so much to me.
Even on days when I’m not feeling strong or capable, I remember living with RA has taught me to become a more resilient person. I’ve learned to overcome difficult things in my life—physically and emotionally—and I know I can get through this, too.
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