By necessity, patients with chronic illness are resilient, with well-established support systems cultivated over time. The arrival of a global pandemic has disrupted these systems almost overnight. Shifting their foundations and revealing why they were erected in the first place. What patients and caregivers need and want is laid bare. Affording us an opportunity to understand what support brands can offer patients not just now, but in the future.
We spoke with 10 patients in the US and UK to hear about their experience of living with illness during COVID-19. We wanted to learn what is going well, discuss their fears and concerns, and understand how this pandemic has helped them identify what additional support might afford them some meaningful assistance in the future. Our qualitative conversations included four patients with relapsed and remitting MS, five stage IV cancer patients, and one moderate Crohn’s patient. All are currently receiving treatment.
When talking with patients, we expected to hear the negative consequences of social distancing, a scaled-back health system, and disrupted supply chains. But true to their resilient nature, patients identified the benefits of their situations. We’ve listed some of these below:
1) The whole world is now at home: Everyone is now living with at least some fear over their health, and while this is difficult, it makes the world of the chronically ill just a bit more normal. Patients, in a strange way, fit in and, in fact, they’re the experts. Can’t go outside and be active whenever you want? Can’t just travel at a whim? Too distracted to concentrate on the usual day-to-day activities? These patients have this skillset in spades.
“We’re all living with massive uncertainty and the unknown all the time. So actually this whole lockdown thing, apart from not being able to see people, isn’t any different. It’s just everybody else now living with uncertainty and the unknown.’ (Cancer patient, UK)
2) They have time to do what matters, specifically be with their families. This pause in time has allowed many to spend time with spouses, children, and parents in a way they have not been afforded before. And it’s not just quantity, but quality. One of our patients was a working mother who reflected that she didn’t need to ‘do all the activities’ at the weekend. For example, go to the zoo or pottery classes. An afternoon in the garden playing was quite enough for the kids, and better for her.
“When I work full time, I feel I must do things for the girls at the weekend. Now I can just be here. At Easter we did an egg hunt in the garden. I’m thinking this is what life should be like” (MS patient, UK)
3) They don’t have to explain themselves: No telling coworkers why they are too tired mid-day to continue a project. No explanation needed why post-treatment illness or exhaustion is keeping them from going to events. With many people working from home, patients can be themselves with no excuses.
Concerns and fears are still strong though
Of course, underneath this surface positivity, fears over COVID-19 are bubbling.
1) Stress is pervasive: There is no way to escape the fear of COVID-19, and their risk status should patients get the virus. With wall-to-wall media coverage and severe changes to daily life, this stress is ever-present. They worry about themselves, their families, the world. They are not able to move as much, eat as nutritiously, find calm. They know this stress worsens their immune systems, and many believe it potentiates physical decline.
“I’m more aware of [COVID] because of I’m getting the battering ram of it on TV constantly. It’s the only thing on the news…and if you don’t watch the news your neighbors are talking about it. For people who have nobody, their anxiety will be through the roof.” (MS patient, UK)
2)Interruption in treatment: Some patients have missed scans and appointments have been rescheduled. Many have concerns about medications being unavailable or delayed. Others say there are reduced services available to them; hotlines have reduced hours and physicians and nurses are overloaded and harder to reach. Even for those who don’t need these services right now, they worry about an emergency, or how long this will go on.
‘If the immunotherapies stop working… my next course of action is inhibitors but the side effects of those are fever and cough. So, they’re not putting people on them now. They’re not starting those. And if I don’t get those then I won’t survive” (Cancer patient, UK)
3)Getting treatment in hospital settings: Four of the patients we spoke with receive infusion therapy and expressed concern about going to a hospital for treatment. Though they are escorted away from any setting where COVID-19 patients are treated, the fear of being close was strong, and something they must overcome.
4)Flare-ups and problems: Many patients worry the side effects of their treatment may appear like COVID-19 symptoms (aches, fevers). Or they may have a flare-up (Crohn’s, MS) that would require medications that could impact their immune systems.
5)Financial concerns: In the US, many of the patients expressed concern over losing their jobs, or spouses losing their jobs, and therefore losing the health insurance that allows them to remain on the drugs they feel are saving their lives. One patient with MS – employed as an essential worker in a call center – said she walks one mile each way to work and back. Usually her family would drive her. But due to the concerns for her health, she is isolating and will not accept the ride. Without the job, she has no health insurance to pay for her medications. Surely an all too common concern right now.
Opportunities for brands to offer meaningful support
For the most part, patients core support systems are still in place. However, during this time of social distancing, patients have a new perspective about living with illness. A perspective which has helped them to identify what they need now and in the future that they’ve never had before. Importantly, patients agree that the brands who supply their medicines can be a welcome source of assistance.
1) Support to reduce the stress: Stress is heightened now but it has always been there. Reflecting on their pre-lockdown lives many patients now realise they could have managed this stress better through diet, meditation, yoga, disease specific support, and a deeper consideration of what they want from work and home life. They are interested in attending the new style of online opportunities including meetings with nutritionists, yoga classes, and disease specific webinars. All patients report that visiting an online portal or website about their medication and attending a brand-sponsored series of active classes would help their overall wellbeing.
“I don’t want to pay 100 bucks a month to go to a gym, but like we have now, exercises online. Free and accessible remotely – that would be useful.” (Cancer patient, US)
“My anxiety is through the roof. And my anxiety about what could happen if I could get [COVID] makes the stress worse. And stress makes my MS worse. … My insurance changed my specialty pharmacy, so I went a week without meds amidst the stress. I realize online yoga is helping, and I’d love to continue in the future. Have yoga designed for someone with MS.” (MS patient, US)
2)Assistance with communications: Some patients have realised that while working from home, they don’t need to explain away being tired or needing a break due to their condition. As they normally would. They said, that in the future, they would benefit from literature or other guidance on explaining their condition to colleagues. So they will not be perceived as lazy or incapable – perhaps even having an information card to hand out.
“The only people who understand my condition right now are HR. Sometimes I’m exhausted and it’s the disease. But I can’t go around explaining to everyone what’s going on. I wish there was a card I could give everyone that says, ‘I’m not lazy, I have Crohn’s!’” (Crohn’s patient, US)
“Not everyone at work knows I have [MS], so they don’t understand why I try really hard not to get stressed. I tell them I am tired, and they say, ‘Yeah I know, I’m tired too’, and I think ‘It’s not the same!’. I don’t say anything. It’s not worth it” (MS patient, UK)
3)Trusted sources of information: Now more than ever, patients are exposed to conflicting information. It can be hard to get a handle on COVID-19 and what it means for their condition. For instance, in the UK there is confusion as to why the government has listed Asthma patients as ‘at risk’ but not an MS patient in a wheelchair. In the immediate term, patients want to understand their relationship to COVID-19. However, the prevalence of conflicting information around coronavirus elucidates the difficulty in knowing which sources to trust in general. Going forward, patients desire a direct relationship with a trusted information source about their brand of medication and their disease. Offering an online chat option with a healthcare professional who knows the drug could help them navigate the world, regardless of a pandemic. For example, should they go on a cruise? Should they be with small children who have runny noses? Questions to the manufacturer can be answered quickly and easily and are not expected to take the place of physician recommendations. Respondents of all ages say they use online resources.
“I want more online communication that I don’t have to search for. That I trust. That I can opt-in for… [I want to learn about] ways to support my immune system, but not stimulate my immune system, to not make the MS worse.” (MS patient, US)
“I’m a big user of Dr. Google. I was a member of a Facebook group – MSUK – however the person who runs it is a bit too anal about things… MS nurses do help with answers to questions, but there is not that much we know about MS still. GPs, as soon as you mention MS, say, go see the MS nurse… but she has a few hundred patients.” (MS patient, UK)
A different world to the one we’ve lived in before
Regardless of what happens over the coming months, or years, it is becoming increasingly clear that the world after the pandemic will be different to where we lived before. When it is all over, the brands that emerge with a greater understanding of who their patients are – and therefore who they are able to provide more meaningful support to – will develop stronger and more beneficial relationships with their patients long-term.
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