Q-and-A with Social Work instructor Nancy Payne
By David Miller and Nancy Payne
April 23, 2020
Nancy Payne, a cancer survivor who was diagnosed with multiple sclerosis more than 30 years ago, says that while those with chronic conditions are used to social isolation, the COVID-19 pandemic offers unique challenges to this population.
When the global community began to shutter its businesses and communal activities due to the COVID-19 pandemic, those who manage chronic conditions were faced with a familiar mandate: social isolation.
Millions of people have autoimmune disorders that weaken their immune systems, and any exacerbation, such as changes in medication or treatment, can further weaken their body’s natural defenses and restrict their interactions with others. Additionally, people with pulmonary issues or those going through cancer treatment often limit their exposure to others due to weakened immune systems.
Nancy Payne, instructor in the University of Alabama School of Social Work, was diagnosed with multiple sclerosis at age 30. She’s also a cancer survivor. Payne has had to isolate herself through previous MS and cancer treatments, and while it’s a familiar refrain, each instance uncovers new physical and emotional challenges.
From acknowledging anxiety and depression, to learning the things one can still do for themselves, it’s vitally important for people managing chronic conditions to practice self-care.
Payne has served as a patient ambassador for Snow Companies, a patient-engagement community that represents more than 200 disease states. In that role, Payne has traveled across the country to speak with other patients, healthcare providers and pharmacy representatives about her experiences with treatments and medications.
Payne recently participated in an online interview with Brenda Snow, founder and CEO of Snow Companies, that centered around managing one’s condition while labeled as “the most vulnerable” during the COVID-19 pandemic. Snow also deals with multiple sclerosis and coined a new program “#IAmPatient” advocating for social distancing to help the COVID-19 outcomes of chronically ill patients.
In her interview, Payne shared her perspectives as a long-term patient and as an advocate and social work educator:
Recognize that the pandemic is not your fault
“People with chronic health issues can feel blamed for the larger systemic health care crisis. It’s common to hear about the financial strain major health conditions place on health insurance and ultimately on our individual healthcare personal costs. One of the major talking points about COVID-19 is the correlation between preexisting illnesses and a higher incidence of more serious symptoms and the highest fatality rates.
We are in this place of collective discomfort. We already hear that age and preexisting illnesses make us more likely to have life threatening symptoms. Yet, that should not thrust us into a place of blame. The pandemic is not a result of patient problems with cardio-vascular disease, cancer survivors or those with weakened immune systems. Just as we didn’t choose major health issues, we don’t choose exposure to COVID-19. Your chronically ill family and friends have not caused the need for social distancing. COVID-19 does not discriminate, and we should not add discrimination to the formula as a way to make sense in a confusing time for our families and for society at large. We’ll continue to be the patients who work even harder preventing exposure to this deadly virus.”
Payne also advocates carefully following medial protocols from your own health care provider, to include social distances or isolation for longer periods than others require or request.
The programs at Snow Companies already focus on patients at high risk for health indicators. In the midst of the pandemic, Snow Companies is offering time and space to bring together patients at highest risk and provide a place in a safe virtual community to decrease the impact of social isolation and increase coping mechanisms. The online “chats” are meant to be supportive of patients and to offer suggestions on ways to cope and thrive during these hard times. While we are socially distant, this program is bringing people back together. The group weekly online chat sessions are a good place to connect safely with others in similar circumstances.
“Speaking to people in the online support group gives me some space to connect with other high-risk people like me. I also want to encourage patients to be their own best advocates for quality health care and outcomes. Patient compliance with health provider recommendations is one of the biggest indicators of slowing disease progression and one of the best ways to create the most positive outcomes for patients.”
Process negative sentiment properly, and with support of others
“There are people that don’t agree with anything, and they’ll share what they think in the news or on social media. Some of it is hard to ignore, like [Texas Lt. Gov. Dan Patrick] suggesting grandparents would be willing to die for the sake of the economy. That makes me wonder if he thinks I should take a pass and actively consent to die, if I need a ventilator. I’ll always believe in the sanctity of life: not one life is any less valuable than another life.
I also try to encourage other patients to carefully speak out against negative comments and sentiments. We all must check our sources for accuracy but also for motivation. Is this information really helpful? If not, it’s time to move on and ignore much of what is coming towards us as we all struggle to survive these times. When I encounter negativity about my health care status online, I try to limit my exposure to such content, especially limiting computer screen time. I also process negativity by talking with my family, friends, my faith community and with other patients in similar situations. I’m in a position to also lean on my colleagues for support. Being a social worker gives me the added benefit of working with people who fight with me against issues of social injustice. This is a time for social workers to be strong and vocal advocates. We teach to our students about advocacy and it’s a time for us to be collectively speaking up as strong advocates during this time of the pandemic.”
Develop coping skills and activities one can practice at home
Just as important: remove the expectation to master something, like a new language or skill, to feel like you’ve maximized your time in quarantine, Payne says.
“I’ve seen people recommending to others that they do things they haven’t had the chance to do. For many of us this is a time to just survive. We must begin to process how, in a global pandemic we need to set a new normal in relation to professional and personal space and time. I won’t likely have the time to learn a new language or take advantage of other great social and cultural opportunities while socially distanced. I’m also working from home, which keeps me busy and brings other adjustment related challenges. It can be difficult to reach activity goals based on what others are doing or recommending. We must do whatever we’re able to do, and sometimes, that’s not getting much done when taking a break is what we need to do the most.”
Keep the good vibes going
“We’ve had this shared experience, and what’s come out of this for me is that there are people who I haven’t heard from in a while who’ve reached out and offered to help by running errands or just lending an empathetic ear. Some of my School of Social Work colleagues have been in touch and have already offered support. Folks like me tend to know how to manage a great deal of what we need. Yet, in these most difficult uncharted times it’s important to ask for help. We need to recognize what we can do for ourselves and recognize those around us who can also help us navigate during this time when we are socially isolated. We need each other probably now more than ever.
Through this period of isolation for our country, and even globally, I hope it raises the awareness of how people with health complications often go through times of social distancing and even quarantine. We’ve learned through the years how to manage these in hard times, but we also should always remain open to learning new skills. Let’s use our collective experiences and continue to encourage each other during these difficult times. We’ll come out of this stronger and wiser if we remain open.”