How Long-Haul COVID Is Shining a Light on Invisible Illness

Novelist Lisa Grunwald, who lives with multiple sclerosis (MS), wrote a touching article for “The Atlantic” about how when the country opens up, her friends will get back to traveling hither and yon while she and others who live with a variety of chronic illnesses will still be confined to their homes.  To quote the Talking Heads, it will be “the same as it ever was.”

Her article begins when her good friend said to her, “This is what we should do. After it’s safe to travel, we should just treat ourselves and go for a river cruise in France.”

Grunwald poignantly gives voice to what many chronic illness patients experienced during the pandemic:

“My whole life was already in lockdown,” one of my neurologist’s patients told him when he asked her how she was coping.  And I’ll admit that when I heard people complaining about their loss of freedom, my first, if admittedly guilty, reaction was “Now you know.” 

They now knew how it felt to be cheated out of a holiday dinner, a graduation, a wedding; to miss the theater, museums, sports, restaurants, and, above all, visits to friends.  They had discovered what it was like to wake up every morning in amazement that their circumstances had not changed, to go to bed thinking about all the things that they would have done if they could. 

People with chronic illnesses certainly do not want others to be forced to spend the rest of their lives in lockdown or social isolation. Many would simply like to be granted access to the same “get-out-of-jail-free” card as others. Barring that, they’d also like, as Grunwald says, for “the healthy to remember, back in the three-dimensional world, what it felt like to live in two dimensions” and to retain some of this newfound empathy for their less able-bodied friends and family members who are stuck in jail.

As cooped-up normies make their travel plans, it is very understandable that Grunwald and other chronically ill people have a sinking fear they’ll be left behind. However, a case can also be made that the pandemic may have made permanent changes in how we live and think that will redound to Lisa Grunwald’s advantage. Below are some of the positive features of this brave new world that those with chronic illness can take some comfort in.

You’ll know who the selfish louts are

There are two types of friends who disappear when the going gets tough. First, there’s the group of friends who want to help but have no idea what to say to their ill friend. These folks are teachable. And then there are the selfish friends in our lives, whom we may have suspected were selfish pre-pandemic but who’ve been definitely outed by COVID. We see their proud braggadocio about their mask-less exploits displayed in our social media feeds. What a maverick! What a shmuck! I say good riddance to these folks. Chronically ill people can now focus their social outreach efforts on the first group and not waste time explaining their condition to the “friends” in the second group.

Those who live with invisible illness may finally be believed

We’re often quick to blame the victim when the causes of their condition are not obvious to us. The same goes for those with invisible illnesses, in which the patient struggles with physical complaints but looks “normal.” These conditions often affect women, prompting physicians, friends and family members to chalk invisible illness woes up to anxiety or depression.

COVID long-haulers are similar to those who struggle with invisible illness that existed before 2020 in that their self-reported symptoms are often not believed and they are being gaslighted left and right by the doctors, family and friends who purport to care about them. However, the sheer number of these invisible illness newbies may make our society take pre-COVID invisible illness more seriously.

In another article from “The Atlantic,” Dr. Zijian Chen, endocrinologist and director of Mount Sinai’s Center for Post-COVID care, fessed up to physicians’ dismissal of the invisibly ill as malingerers and described how the pandemic might have changed that in speaking about physician long-haulers: “These are doctors that we work alongside. And we know that these aren’t patients that are faking it. If my fellow doctor, whom I work with closely, is telling me that they can’t get through the day because they can’t think straight, I’m going to believe that.”

It’s a shame, Dr. Chen, that you didn’t believe your patients before. However, if it takes hearing fellow physicians complain of similar symptoms to shift providers’ attitudes towards the invisibly ill, so be it.

Increased funding for research on invisible conditions

Funding for research into one well-known invisible condition, myalgic encephalitis/chronic fatigue syndrome (ME/CFS), has been pitifully low compared with that for other diseases.

By contrast, Congress provided $1.15 billion in funding over four years for NIH to support research into the long-term health consequences of COVID-19 infection. This is big news for ME/CFS and other people with autoimmune conditions since many of these, like COVID-19, are ignited by a viral infection and there’s an overlap in symptoms. Again, whatever it takes.

Finally, the pandemic has changed how we think and live

Most of us may now have more empathy in general than we did in February 2020. Because COVID’s been a shared ordeal, it’s easier to put ourselves in other people’s shoes, especially when we or someone close to us has had COVID. An article in “Real Simple” describes how Stephanie Preston, PhD, professor of psychology at the University of Michigan, “believes since we’ve all endured a traumatic event, it’s unlikely compassion will completely dissipate as we move further from the intensity of the pandemic—but the degree of compassion we have for each other may waver and vary.”

Also, working-from-home is here to stay, either as part of a hybrid in-office/remote combo or as a standalone remote-only arrangement.

For me personally, the past 13 months were a time to get real. This annus horribilus has led me to examine my values and to try to display them more in my daily interactions with others. That’s still a work in progress though.  I’ll get back to you on where I’m at.

My homework assignment for all of us as 2021 chugs along: when someone complains that they’re ill, take them seriously and don’t forget about them.