On why it's important to redefine "brain injury" in the context of long COVID
Unfortunately, physicians — thoughtful and well-meaning, excellent clinically, etc. — they have a certain notion about what constitutes a brain injury: A brain injury is a stroke; a brain injury is you fall off a ladder and you crack your skull on the driveway. That's too often what is defined as a brain injury – and of course, it is.
The problem is there are a lot of other ways to get brain injuries. You can be in the ICU on a ventilator. You can have not enough oxygen get to your brain, something called hypoxia, that can be a brain injury. You can be delirious, which is deleterious to your brain, that can cause a brain injury. And you can have long COVID. That, too, can basically be a cause of a brain injury.
So we need to change the paradigm a little bit so that people start appreciating, "Gosh, you can have this medical pathway to a brain injury and we need to refer you to cognitive rehabilitation." It's not only that you're in Iraq and you survive an IED explosion. It's not only that you're on the football field and have a concussion. There's a medical route to a brain injury, but no one, almost no one gets referred for rehab. We have to change that.
On how social isolation may worsen long COVID
[People with long COVID] feel like other people don't really understand them and they feel like the overtures they have made to try to connect with people ... are often met with negative sorts of things. That is, they engage with people, they're wearing masks. People look at them with a side eye. They feel embarrassed. Often people don't get how impaired they actually are because they don't look impaired. So often they've tried to connect socially, that has not gone necessarily very well. They often recede into this hermit-like existence. Often their fatigue is very confining. Couple that with fears about getting COVID again, their world gets smaller and smaller and smaller.
And the problem with that, I think, as a point of fact, we know that the more social support people have, the better they do; the less social support they have, the less well they do. As people recede into that house or that apartment, sometimes that room, they lose those social connections, and, not surprisingly, they get more and more depressed.
On how to ask for help with long COVID, especially if you lose your job or can't work
Social Security, short-term disability, long-term disability, for some people, there are a range of options that are available, but people need to be aware first of what is available. They need to think of how to ask for it. ... If you're cognitively impaired, you're obviously less good at filling out complicated forms. You're less good at advocating for yourself.
That's where family members come in. That's where friends come in. Asking for help is one of the things we work on in our support groups ... the right and wrong ways to ask for help. The research says that if you ask someone for help, whether it's to take you to the store, whether it's help in filling out a form, if you ask them directly, they'll almost always help. If you send them an email, they often won't. So learning to ask for help, it's an important skill and it's one that people with long COVID unfortunately need to learn.
Sam Briger and Seth Kelley produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Carmel Wroth adapted it for the web.