Additional Supports Needed for People Living with Long COVID
The people we spoke with shared their experiences coping with the limited supports in place for people living with long-COVID. Established programs such as home care, workers’ compensation, or government-funded financial benefits often had eligibility requirements that didn’t fit the realities of long COVID. Informal support from employers, family, and friends was often limited, short-term, and unsuited to some of the complex situations people found themselves in. The participants we spoke with told us about some of the ongoing challenges they face and the additional support they need.
Practical support with daily tasks
One of the most common challenges faced by people living with long COVID is managing daily tasks such as cooking, cleaning, driving, and childcare. Limited mobility, pain, brain fog, and chronic fatigue are just a few of the symptoms that make it difficult for people to carry out these tasks. Many of the people we spoke with told us that their lives were heavily impacted by their inability to manage these activities as they had in the past and that they needed more support.
For example, Angela is unable to clean her own house. She told us, “I have a friend who … owns a cleaning business … And I would love for her to come right now. But obviously, I’m not working so I can’t afford it.”
Paulina is overwhelmed by parenting and household tasks.
Transcript
You know, people with young kids. Like, I don’t – I don’t know if it would be even possible to get, like, a – like someone assigned to you that can come once a week to help you whatever – like if it’s putting the dishes away or watching the […]
Kari wishes that people would offer to help with everyday tasks without her having to ask.
Transcript
I think like just the everyday stuff, somebody to, you know, if I had a family member, if the tables were turned, I’d probably go, if it was one of my kids or something, I’d probably go to their house once and week and clean their house for them. So, […]
Carrie 1 needs help at home but doesn't qualify for home care.
Transcript
I’ve attempted to get homecare and it’s been a miserable experience. They don’t understand that an episodic disability, they don’t understand that some days, I can walk to make meals and some days I can’t. They don’t understand that if I use my energy to do laundry, then I can’t […]
Mental health support
Another area of shared concern was the lack of mental health support for people living with long COVID. Many of the people we spoke with described their struggles with anxiety and depression brought on by the loss of physical health and uncertainty about whether they would ever get better. Some said they were mourning the loss of their former life and were struggling to adjust to a “new normal.” The inability to work, loss of employment, and negative impacts on relationships were additional sources of stress for many. Paulina talked about the widespread mental distress she encounters in her online support groups: “A lot of people have gotten separated, divorced … people are in so much need to get … support … [because] emotionally and mentally … it’s been so hard.”
Kari explains why there needs to be more mental health support for people living with long COVID.
Transcript
I think the biggest thing is just that acknowledgement and that understanding that this is real, and people are struggling, and people are losing relationships, they’re losing homes, they are, the mental health side of long COVID is massive. It’s almost, I think, bigger than the physical part of long […]
Cathy receives psychological support through workers' compensation but the support is limited and she has to fight to keep going.
Transcript
I could have used a lot more support – I’m going to say, like, psychological, emotional support with this. And everybody needs it. And because I got sick at work, mine has been provided to me. But we all know how much it costs to see a psychologist. There needs […]
Information for employers
Some of the people we spoke with continued to work, often from home, or on a part-time or limited basis. Several spoke about the difficulties they had explaining their accommodation needs to their employer. They wished there were more resources available that helped employers understand what they could do to support employees living with long COVID.
Katherine has been working from home. Her employer now wants her back in the office despite the risk to her health.
Transcript
Workers’ compensation is advocating for me to continue to work from home. My employer is pushing against it. I think that has a lot to do with why they wanted me off work. I think employers really need to start wrapping their head around, once a person has been exposed […]
Christine wishes there was more information about long COVID specifically for employers.
Transcript
I wish that there was more information that’s sent out to work, so that people understood … I got a really good small sheet on – I think it’s only seven pages long – on workplace accommodations for long-haul COVID. And it’s so easy – it looks like an infographic […]
Support for caregivers living with long COVID
Two of the people we spoke with described themselves as caregivers whose ability to carry out their caregiving duties is now heavily impacted by long COVID. Lesley has an autistic son. She explained the risks to caregivers who, themselves, have a chronic health condition. “I did go to a … Care for the Caregiver session once … It was for parents with kids on the spectrum. But I actually have not heard much about any types of programs for when you’re a chronically ill caregiver … The women that I know who have been ill … you’re just always last. It’s kids first, then your parents, then the rest of the family and then you … You get this post-exertional malaise if you do too much, you just crash … so you have to be really careful when you’re caring for people.” Maggie is a caregiver to her elderly mother. Trying to find resources for her mother while she, herself, was so unwell, was overwhelming. “People when they’re caregivers, at the best of times … are stretched to their limit … I think what I would have liked to have had, is something a little bit more, available to me more pro-actively so that I didn’t have to go looking … Those first few months I was so exhausted that having to go look for help or resources, was tremendous, I just didn’t do it at times because I was just too tired. I was just too exhausted. I was too hopeless.”