COVID-19 has changed life for everyone – but for many who live with autoimmune diseases, those changes have been more significant and far-reaching, because of the potential of higher risk for complications if infected with the virus.

We asked members of our community to share how they’ve adapted to life during the pandemic, and to offer advice on how to stay healthy, positive and resilient. Here’s what they had to say.

Toni Grimes: Creating a Routine 

Toni-Grimes-SmilingTaking extra steps to avoid getting sick is nothing new for Toni Grimes.

“Prior to the COVID pandemic, I was always a person that shied away from others who were sick, I always carried hand sanitizer and wipes,” she says. “Living with lupus, I am more susceptible to everything, so the current guidelines have been my way of life for the last 13 years.”

For Toni, who lives in Arizona, this means avoiding leaving the house as much as possible. She’s been able to move many of her daily activities online, such as having doctor’s appointments through telemedicine. She also leads a lupus support group, and though she misses seeing her lupus family in person, she’s enjoyed connecting with them online.

As a retired member of the military, Toni thrives in staying productive and having a routine, and that’s no different in the face of a pandemic: She gets up at the same time every day, works out, and checks in with family and friends via calls and text.

“I also do lots of projects to keep my mind active and off the pandemic,” she says. “And we eat one to two meals a day outside in our backyard oasis to enjoy the fresh air and sunshine.”

Living with lupus has made navigating uncertainty and difficult times second nature for Toni.

“For me, lupus is a truly invisible disease,” she says. “People always say, ‘but you look so healthy.’ I suffer excruciating pain 24/7 but I keep a smile on my face because lupus doesn’t have me, I have lupus. It’s a daily fight, you have good days and bad days. I relish the good ones and make it through the bad ones.”

Laura Genoves: Making the Most of Today

Laura-Genovese-smilingLaura Genoves has lived with rheumatoid arthritis (RA) for more than two decades. She’s getting through the pandemic by having two clear understandings: What she can control, and what she can’t.

“The scary thing about this virus is all of the unknowns and ‘what ifs?’” Laura says.

She navigates this uncertainty by getting her information from credible sources, not dwelling on what’s beyond her control, and focusing on the positives in her life. 

“For me, it's about making the most of today, and focusing on the things that make me happy — like working in the garden or taking the dogs for a walk in the sunshine,” she says.

She’s still managing her RA well. She’s now getting medications shipped to her and taking extra care to sanitize boxes when they arrive. While the pandemic has led to uncertainty and anxiety for Laura, it's also had a silver lining: It’s given her borrowed time with her soon-to-be-adult sons.

“I’ve got both kids home most of the time, and they’ve been very careful about wearing masks and gloves and taking extra steps to protect me,” she says. “One son is back from college and the other is nearing the end of high school. I’ve really been enjoying this time with them.”

Ronda Palmer and Cori Broberg: Finding Ways for Family Time

Denise-Brown-Cori-Broberg-and-Ronda-Palmer-smilingRonda Palmer and her adult daughter, Cori Broberg, both live with lupus. And both women have been taking extra precautions to avoid being infected.

“I basically stayed in the house for two months straight,” Ronda says. “We usually have our grandkids over every weekend, and it’s been really disappointing not to be able to do that.”

Ronda’s daughter, Cori, a hairstylist and mother of two, has also taken extra steps: Before hair salons closed, she was making extra sure that her clients were feeling healthy, and screening them for fevers and other symptoms before their appointments.

Cori isn’t able to work right now, but she’s doing her best to homeschool her seven and 11-year-old sons. In recent weeks, they have found a solution for the whole family to be together: Cori brings her kids to visit their grandparents, but they only play in the backyard while Ronda and her husband stay inside.

“It’s been difficult, but it hasn’t all been bad,” Cori says, “It’s been nice to finish a cup of coffee in the morning without running around and making sure everyone has their shoes and backpacks. And it’s been a real blessing to have more time together as a family.”

Jamie Burgess: Managing Stress and Expectations 

Jaime-and-Olivia-Burgess-smilingFor Jamie Burgess, stress is one of the biggest aggravators he’s faced since being diagnosed with inflammatory bowel disease (IBD) nearly two decades ago.

“I’ve learned that stress makes it more likely I’ll have a flare and that reducing stress can accelerate recovery,” he says, “but there are still times when I get stressed, and then I get stressed about being stressed, and things spiral from there.”

Being isolated at home during the COVID-19 pandemic has challenged Jamie to find new ways to cope and stay positive. He lives outside Seattle, Wash. with his wife and eight-month-old son, and he estimates he has left his house twice in the past two months.

“The isolation creates new temptations to wallow in self-pity, so I’ve had to be extra vigilant about counteracting that and about addressing my mental health,” he says.

For starters, Jamie reminds himself that there are benefits to working from home. He doesn’t have to worry about driving to work and maybe needing a bathroom along the way, or about having to step out of important meetings.

“It definitely alleviates stress to know the bathroom is just five steps away,” he says.

Telehealth helps too. Jamie is in regular contact with James Lord, MD, PhD, who gives input on Jamie’s medication regimen — which wasn’t possible before COVID-19 hit.

“It’s so much easier to trade brief messages in the secure portal with my doctor than to travel to an in-person appointment just to ask a few simple questions,” Jamie says, “and it helps me avoid risk of infection.”

He is also getting creative about maintaining his support group. Jamie makes it a point to schedule video calls with friends, and he actively participates in Reddit groups for people with ulcerative colitis and Crohn’s disease. Participants in those groups constantly post about new IBD research and treatments, and the groups are a venue where Jamie can ask questions and share tips with people going through the same thing.

“The discussions in those groups range from ‘Hey, I’m really struggling with this’ or ‘I just need to vent’, to ‘Is anyone else having a reaction to this medication’ or ‘How successful has this been for you,’ and everyone supports each other and uplifts each other,” Jamie says.

This helps Jamie stay positive and stick to a key rule he’s learned over the years: Avoid self-criticism if he has a bad day or doesn’t see his symptoms improve from one day to the next.

“I’ve learned to just take each day as it comes,” he says. “If it’s a good day, I try to write down and remember what I did. And if it’s a bad day, I treat it as a learning experience, rather than something to beat myself up about. It’s important to celebrate the successes, however small.”

Read more about managing stress and autoimmune disease during COVID-19

Ellen Ahearn: Focusing on the Good 

Ellen-Ahearn-smilingSeattle resident Ellen Ahearn was on a work trip in California when her company declared an indefinite work-from-home order at the beginning of March. Her family has a home there, and she decided to stay in California for a bit longer. She didn’t know she’d be there for months.

Ellen lives with three autoimmune diseases: Rheumatoid arthritis (RA), Sjoren’s syndrome and primary biliary cirrhosis. And while the medications she takes for her RA mitigate her autoimmune disease, they also suppress her immune system.

“With a weakened immune system, you just can't be too careful,” Ellen says. “And now I have this nagging, heightened sense of awareness. I find myself worrying about things I wouldn’t normally think twice about — like ‘am I feeling tired because of my autoimmune diseases or could it be COVID?’”

Still, she’s finding ways to manage: She’s been able to get most of her medical care remotely, and took extra precautions to get one in-person blood draw. She’s been able to keep busy at work and takes long walks at odd hours of the day to exercise but avoid people. Her husband and adult daughter joined her in California (after sequestering in different parts of the house for two weeks). They’ve been taking extra steps to keep her safe and are enjoying playing games, watching movies and cooking as a family. Ellen stays strong by focusing on the good things in her life.

“All things considered, I’ve been extremely fortunate, and we’ve had many opportunities to share family time that we usually wouldn’t,” she says. “We are a resilient society, and we’ll get through this — life might not be the same after, but we’ll rebound, and possibly be more innovative than we ever have been. There will be changes, but some good will come out of this too. Life will go on.”

Category: 
Living With A Disease

July 10, 2020

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