Ensuring Patient Empathy In Long COVID Coverage

Issue Nineteen

Hallo, Community! Excited to share that Reframing Disability now has over 500 subscribers! Thanks so much for reading, and offering feedback. Your emails and texts keep me motivated to work on this newsletter. Please keep writing and sharing your thoughts on the content, inclusion, your favourite reads, or anything else - I write back.

In this nineteenth issue, hear from Indian journalist DVL Padma Priya about her experiences living with Long COVID, tips for reporters from Norwegian journalist Hanne Østli Jakobsen’s paper, Long COVID resources, an accessibility tip, some more poetic accessibility, and recommendations.

But first, I’d really love to know you, so could you help me out by taking this 1-minute survey?

---

Would you like to share your best practices with Reframing Disability?

Are you a disabled journalist or content creator? An accessibility consultant? Perhaps an academic who has researched disability in the media? If you are someone who has any kind of expertise in disability-inclusive content creation, and would like to share it with the readers of Reframing Disability, please write to me at pritisalian@gmail.com or reply to this email. 

---

Poorly understood and ignored by physicians, scientists and the public, Long COVID or Post COVID-19 is a disease that deserves more attention from everyone, including the media. 

According to the World Health Organisation (WHO):

“Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis.” 

A few countries, including the US and the UK recognise Long COVID as a disability depending on how someone is affected by it. There is some global recognition with the International Long COVID Awareness Day as well, observed on 15th March. But, there’s a dearth of coverage on the disease. 

Journalist DVL Padma Priya, is the the co-founder and editor-in-chief of Suno India, an award winning podcast platform bringing quality audio journalism. She also founded the India Covid Survivors group on Telegram. She has over 15 years of experience across journalism, digital storytelling and advocacy-communications.  

Each time I have met or worked with Padma Priya, I have realised how helpful and generous she is with her knowledge and expertise. I recently spoke to her about living with Long COVID and the significance of improving media coverage of the disease and lived experiences of chronic illness. 

When did you realize you had Long COVID? 

[In July 2020], two months after I first had COVID, I blacked out in my apartment. I felt my heart rate was very high and before I could sit down, I blacked out. I went to the doctor and they said, “Oh, I think the BP is low.” But the heart rate was through the roof. Things didn't get better from there. I had a couple more of these blackouts. As soon as I would stand or sit, I would start to blackout. That’s when I knew that there was something off about my health. 

I started looking up for any support groups or people who had recovered from COVID and found one Facebook group of survivors where I read more about other people experiencing similar things. A few months later, some people started calling it Long COVID on social media and that's how it became part of the terminology. 

Can you share a few ways in which your body began to respond differently to things after you had COVID?

It's been over four years now since I got COVID the first time and after that I got it twice again. What I thought was post viral symptoms and would go away, hasn't. Essentially, it has led to a condition called dysautonomia where the autonomous nervous system which controls the heart rate, the blood pressure and other bodily functions, malfunctions. So, the blood doesn't immediately rush to protect my brain when I stand up and I experience a blackout because the brain can't go without blood. It was pretty bad in the first year. There were months when I was not upright, could not sit and was pretty much just lying on the bed reading or watching TV. I needed support to walk and even go to the bathroom. 

Part of my job is recording podcasts, but in the beginning, I couldn't hold a conversation. I would read the same paragraph 10 times over and not understand what it meant. It was incredibly hard for me. When I started typing something I lost my thought or when someone told me something, I forgot. 

I’m managing much better, but even now, my body can’t properly regulate changes in temperature. I'm very intolerant to heat now. 

What are the accommodations you need for work? 

From the time I've had these symptoms, I’ve [worked for] my own company. But if I were to return to full-time work, work from home would be the biggest accommodation that anyone could make for me, because if I sit for too long and talk, it drains me faster than when I'm lying down in a reclined position and talking. Most of the time, I'm actually doing a lot of my work that way. Sometimes, when I feel faint, all I need to do is just lie down for two minutes and then I’m okay. At other times, raising my legs and sitting is all I need to do. 

I would say I'm managing it much better now. Most people with any sort of chronic illness might just need three days of work from home. My brain is working perfectly. It's the body that's just not keeping up. And if it could be done during the lockdown during the peak COVID period, why is it not being done now? 

Have you faced any ableism because of your illness? 

I think a lot of people across countries don't understand Long COVID. There are pockets within the scientific and medical community who don't believe in Long COVID. They all agree that post-viral is an issue but they don't want to call it Long COVID. They don't want to acknowledge the severity that the COVID virus has had on the brain, on the heart, or on pretty much every single organ of the body. So I think the most ableist comments that I have received in the last four years have been actually from those in the medical community. From being told that if I lose weight, everything would be fine, to that I have depression because of COVID, I’ve heard it all. I’ve been told to take antidepressants, asked if I was really that ill, or if I was doing it for attention. I think just as a woman and as a mother, there is that added burden on you when your husband is having to take care of you. So it's a constant guilt trip that’s strictly put on you. I think that's the hardest part of being unwell.

The most frustrating part has been when my friends tell me, “Oh my god, I don't know how you pull through. You're so brave.” And I literally say, “What else am I supposed to do? What are my options?” But then there is really a dark side to these things, where you're literally battling with your mind every single day, telling yourself not to give up. There's nothing inspiring about that. 

What in your capacity do you do to build awareness around Long COVID?

I started a support group because of my own frustration, a little after the second wave of COVID started, thinking I can't be the only one. I've been doing whatever we can in terms of giving media interviews and writing in the media. I have also been a part of the Patient-Led Collaborative Research at PLRC (Patient-Led Research Collaborative) which has published quite a lot of research on Long COVID. We did a podcast series at Suno India, Gasping For Breath Season 2, and I also contributed my lived experience for the book, The Long COVID Survival Guide. I’m also volunteering to update WHO’s post-COVID-19 guidelines. 

How does the media need to portray Long COVID and what needs to change?

Media should not write about Long COVID in spurts or only when some research comes out. I feel like the media and medical community are both overstretched with too many competing agendas. They should write more regularly and reach out more to doctors and researchers to understand what's happening. There needs to be more questioning of both the state and the central governments about what they are doing in the space of COVID research or whether they are allocating any budget to research or pandemic management. Research being done now could lead to benefiting people in the next pandemic, which may inevitably be another viral pandemic. 

Journalists should also look into intersectional perspectives of people impacted by COVID both physically and mentally. In general, there is not much written about chronic illness in our society. I think people with chronic illness are just expected to live with it and move on. 

Journalists should cover the nuances in the daily life of someone with a chronic illness. For example, my daughter was just four when I fell sick. She still wanted me to sometimes pick her up and I couldn't do simple things which gave me joy like picking her up and going for short walks with her. 

Another example is that given my limited energy in a day, I have to be careful about where I expend it. I have learnt pacing which is widely used by those in the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community. I can probably hang out with my cousins at home but cannot go out shopping with them. One starts to make all these little bargains in life when they have chronic illness. These are the conversations that need to come out in the media. 

---

More tips for journalists

We agree that patients’ lived experiences are critical in journalistic stories. My colleague and fellow Narnian at the Reuters Institute for the Study of Journalism, Hanne Østli Jakobsen, wrote a paper on the coverage of Long COVID in the Norwegian media. To balance an empathetic presence with the need for journalistic verification, she came up with some strategies reporters can use during their coverage of Long COVID. 

“Giving the patient an active role in the article, presenting them as someone the other sources talk with, is different from having them be the object that politicians and researchers talk about. That means fully integrating them and their perspectives in the discussion.” Hanne wrote.

She proposed a few strategies that a journalist can use while working on a story to try to reduce the patients-expert divide. (Read the full paper for other insights).

Preparing the interviewee

Prepare the patient intervieweee by telling them in advance to expect difficult questions about their conditions.

Letting them explain

Let them explain their reasoning by asking, “Are you sure it’s caused by COVID-19?” and not “Why do you think it’s caused by COVID-19?”

Right of Reply

Give them any opportunity to respond when a scientist or another source contradicts their experience.

---

Recommendations

Read 

The Long COVID Survival Guide: How to Take Care of Yourself and What Comes Next - Stories and Advice from Twenty Long-Haulers and Experts:

A support group in book form, The Long COVID Survival Guide is here to help. Twenty contributors—from award-winning journalists, neuroscientists, and patient-researchers to corporate strategists, activists, and artists—share their stories and insights.

The Sick Times

An independent news site founded by journalists Betsy Ladyzhets and Miles Griffis, reporting on the Long Covid crisis, Covid-19, and infection-associated illnesses. The website is a rare and much-needed resource on Long COVID journalism.

Listen

The Long COVID Podcast has a mix of medical expert, researcher, personal experience and recovery stories. 

Watch 

Loved this inclusive new video by British rock band, Coldplay, called “feelslikeiamfallinginlove” (Feels Like I’m Falling In Love). 

Choreographed by Deaf actress, Natasha Ofili, the video features the performing arts ensemble Coro de Manos Blancas (White Hands Choir), which comprises persons with diverse disabilities.

Natasha, who choreographed the song using American Sign Language, explained her movement art: “When people see ASL, they watch the movement of the hands and think, “Oh my, so beautiful.” But it is more than that—it is also about the eyes, the emotions on our faces, and how we show it through our bodies.” 

“By taking apart the song verse by verse and then putting it back together, I created a visual story of emotions, facial expressions, hand movements, hand placements (i.e., hand on heart), and signs that align with the song’s meaning, Chris’s meaning, and my interpretation,” Natasha wrote. 

I love everything about the video, though I wish someone had advised them about screen reader accessibility and it was named more like “FeelsLikeIAmFallingInLove”. 

---

Accessibility tip of the fortnight

What are camelCase and PascalCase hashtags?

I have written about this in Reframing Disability’s earlier issues, but it’s a good time to revisit it.

camelCase is a way of writing words in a compound phrase so that the first letter of each word, excluding the first word, is capitalised. When you use camelCase in your hashtag, it becomes easier to distinguish between words. For example, #callMeLater, instead of #callmelater. Which one reads better? 

PascalCase is another way in which the first letter of each word, including the first word, is capitalised, this way: #CallMeLater.

People who are blind and have low vision use a screen reader, an assistive software that reads text out loud on their phones, tablets and computers. Without camelCase or PascalCase, screen readers are often unable to recognise phrases with hashtags and cannot read them. Using camelCase or PascalCase hashtags is perhaps the simplest step for social media accessibility. It will not only make your social media posts accessible to screen reader users, but also to people with dyslexia who struggle with forming and recognising words, people with low language literacy, and cognitive impairments, and anyone who likes a smooth reading experience. Well, who doesn’t?

One problem that occurs, especially on LinkedIn, is that the hashtag suggestions the platform makes are all in lowercase and even tries to auto-correct PascalCase hashtags. If you’re in a hurry, you might just forget to change it. But now you know, so don’t let LinkedIn or any other social media platform dictate your work.

---

Events

Mental Health & Movies - The Good, The Bad & The Ugly

Fireside chat with filmmakers, mental health professionals and bloggers examining the impact of the portrayals of mental health in movies.

When: 20 July, 2024, 6:30-8:00 pm

Where: Bangalore International Centre, Domlur, Bengaluru

Register here.

Stories in Motion: Mental Wellness through Art and Narratives by Dr. Ankit Dwivedi

Interactive workshop exploring the nuances of mental health through engaging stories, helping participants gain a deeper appreciation for the human experiences behind mental health challenges.

When: 21 July 2024, 5:00 -7:00 pm

Where: Bangalore International Centre, Domlur, Bengaluru

Register here. 

---

Thank you for reading Reframing Disability! Hit reply to share your thoughts or just say hi. Connect with me on LinkedIn and Twitter! Share Reframing Disability widely to support my work.

Warmly,

Priti