In late April 2020, we asked our Longitudinal Study of Bipolar Disorder research participants to join with us in monitoring the impact of the coronavirus pandemic on their lives as we moved through months of social isolation and uncertainty. Links to questionnaires that participants usually filled out every two months began arriving weekly, asking about mood and functioning. Every two weeks, a link to a questionnaire specific to the coronavirus was sent.
The Coronovirus Impact Scale is a 12-item scale developed by Joel Stoddard at the University of Colorado and Joan Kaufman at Johns Hopkins University. Individuals are asked how the pandemic has affected their routines, family income, access to food, access to physical and mental health treatment, and access to family and support systems. The questionnaire also asks about stress related to the pandemic and personal experiences with COVID-19. The questions are rated on a 0-3 scale indicating there’s been no change, mild, moderate or severe change since the pandemic. The last question asks participants to tell us about any other ways their lives have been impacted by the pandemic.
Analysis of this data is ongoing. We have heard stories both positive and heartwrenching. One person spoke of how happy she was to be at home with her children while another tried to manage the stress of working from home after her daycare closed. An essential care worker dealt with loneliness and others expressed fear for their elderly relatives. One participant increased the use of mindfulness as a coping strategy. Some individuals personally dealt with COVID-19 or had family and friends who struggled with the virus.
By tracking our participants’ response to the pandemic over time, we will develop a picture of what special challenges and strengths individuals with bipolar disorder have when facing social isolation and the additional stressors caused by the pandemic. This information can provide insight into bipolar disorder and help guide mental health treatments in the future. We’d like to express our thanks for the time and effort our participant partners have taken to provide us with this valuable information.
The following are some comments from Prechter Longitudinal Study participants about their experiences during the pandemic.
"I have never been so stressed out in my life. It is a struggle every day to remember to take care of my mental well-being on top of everything else. An unexpected reminder has arisen with the weekly email I get from the Bipolar Research Team asking about my experiences through these unimaginable-but-true times. That email nudges me every week to check in with myself and adjust my supports as needed; I don’t always get to completing the questionnaires, but it comes every week nevertheless and always makes the same non-judgmental inquiry: how are you feeling? There will likely be no paradigm-shifting discovery because of my participation in the survey, and I continue to struggle day-in and day-out. And yet, I want to acknowledge that the simple weekly email from the Bipolar Research Team is a service in and of itself, and I am grateful." -Karen
"I am 72 years old. My first episode occurred when I was 17. I have had lots of help from psychiatrists, hospital staff, therapists and family and friends. Because of that (and I must give myself some credit, too), I have had an extremely fulfilling life. Last year, I had my worst episode ever. It was a depression. I had only one previous depression 43 years ago; all others had been manic, psychotic, hypomanic or mixed. The depression started mid-May and lasted until I had ECT at U-M in November. The ECT pulled me out of a depression accompanied by extreme anxiety. Various drugs had not helped. Now I feel very well. My 43-year-old daughter tells me, “You are lovin’ life while everyone else is having a bad time.” It is so true." -Anonymous
"Mental illness isn’t a character flaw. It isn’t being stupid or crazy or evil. Mental illness is leading a dual life; one that we show and one that is hidden. It is a longing to belong yet solitude is cherished. It’s gratitude for help and understanding from family, friends, and caregivers; it is a feeling of guilt for needing help. I spend part of my life hoping I don’t die, and the rest of the time wishing that I would. Thank you so much for all that the Prechter Program does. You have all done so much to inform people and so much to lessen the stigma of having a mental illness." - Barbara
"What this time during the coronavirus has taught me is to be thankful about what I do have, and that’s my immediate family. Of course I have adapted to connect with my parents and family across the country via FaceTime and other platforms... I have learned to appreciate my time with my wife and daughter more. I’ve learned more about how precious time is, and that no one thing (job, hobbies, social media, friends) completely defines me. While at times things have seemed chaotic and the pace of life seems to have crawled along, I have been reminded of times when things were worse for me personally and when I do, it has put the current circumstances of the pandemic in better perspective." -Trevor
"I feel like now the general populace is living how I do every day. Including the bad: random anxiety, lack of work / money, & having to constantly learn a new normal. But, also, the good: re-evaluating what is necessary / wanted in our lives, extra time to do anything you want, & learning self-care & kindness." -Scarlet
"Four months of isolation cut off from society during the pandemic has been very difficult. Add in my bipolar 1 disorder with mixed episodes and rapid cycling, my life can quickly spiral dangerously out of control. To help keep my disease from triggering during this challenging period, I maintain a daily routine that consists of proper diet, exercise, going to bed at the same time, getting out of bed at the same time, no alcohol or drugs, staying on my meds, and reaching out to family and friends for support." -Bryan
"It’s like non-bipolars get a taste of what it’s like to be us. Anxiety, depression, fear… This pandemic has taught them a glimpse of how we live and that you can’t just “snap out of it” or “turn off” those feelings. For us, it just heightens what we have and makes us fight twice as hard to find balance. Especially when our support system is off its rails" -Stacey
"Obviously, COVID has been very confining. However, when I’m in a depressive state (which I am now), it has been a relief to have shelterin-place, because I do that normally when I am depressed. So now, it’s not characterized as unusual behavior." -Anonymous
"Bipolar is a roller coaster that I don’t get on. It gets on me. It’s not a thrill ride or a chill ride or a spill ride. It’s an ill-ride. I’ve spent decades grappling with the negative aspects. The positive aspect is being blessed with creativity and drive. We should be grateful to the artists who create, complete, and share the result of their energy." -SBD
"I have been ok health-wise since the virus broke out. But I have been getting somewhat irritable and depressed during this time. I had a breakdown for a little while and stayed in bed for the day. I’m trying to keep positive and think of ways to improve my situation and not rely on government handouts." -Anonymous
"Compared with the injustice and racist institutions I live with in America, the pandemic is no problem. My PTSD from the 1960s is triggered, so I cry and pray randomly during the day. The reality is too much for me, but I make it. Thank God for tears; I only wish they could wash away man’s inhumanity to Black people. I am tired…" -Robin
"Being bipolar, and the sole caregiver of a family member with advancing Alzheimer’s, can be a struggle in normal times but the Covid-19 pandemic really has added to the stress. Just getting the questionnaire each week from the research team makes such a difference because I know someone cares and is there for my mental health concerns." -Danny
"I didn’t cower in fear of COVID-19 but chose to wisely go on living. My greatest sorrow came with the ceasing of my one full-day per week volunteering at my grandson’s elementary school. Which meant I didn’t get to spend time with his brother, mom or dad." -Michael
"The quarantine has severely limited access to many of my strongest coping mechanisms — family, friends, social interaction. I feel like I’ve lost ground during this time and have developed new mental health issues." -Barbara