August 9, 2023
By Courtney Wise
Good morning, MindSite News readers! Today we take another look at the overwhelming mental and physical exhaustion caused by long Covid, in which some people who have been infected with the virus that causes COVID-19 experience crippling long-term effects from their infection. A Connecticut urgent crisis center provides an alternative to hospitals and wait lists. And more tributes pour in to Sinéad O’Connor.
Plus: Are hallucinations really necessary to get the full effect of psilocybin treatment for treatment-resistant depression? Read on to find out.
The physical and mental exhaustion of long COVID
The fatigue of long COVID is nothing like the typical exhaustion at the end of a long day. Rather, it’s “like a complete depletion of the essence of who you are, of your life force,” Alexis Misko told The Atlantic. She’s lived with long COVID since contracting the virus nearly three years ago. In the time since, she’s graduated from being totally wiped out after 10 minutes of standing to being able to shower and watch TV on the same day. Interviews with Misko’s long COVID peers reflect similar stories.
While not all long COVID fatigue is so severe, even those with ‘moderate’ symptoms say their normal daily functions are more limited. Julia Moore Vogel, a former long distance runner, said that washing her hair leaves her as exhausted as the runs she used to do. Post-exertional malaise, or PEM, is the cause. It’s not just fatigue, but rather a physiological state in which all the symptoms of an illness become supercharged. There’s fatigue, cognitive dysfunction, gastrointestinal problems, and more. The symptoms make normal ‘get well’ tactics harder to employ. “All the things I’d do for mental health before were huge energy sinks,” Vogel said, making casual walks, exercise, and hanging with friends unusually difficult.
Maybe more difficult than navigating all of that is the reality that people with PEM are often misunderstood and misdiagnosed. Friends relate being bedbound to a weekend of relaxation. Physicians dismiss their accounts, blaming depression or lack of motivation, asserting their struggle to get moving again is from being too sedentary. Living in a society that praises ‘productivity’ makes it no easier. “Present-day society stigmatizes those who don’t push through, keep at it, show grit,” said Gwynn Dujardin, a writer living with chronic fatigue syndrome. There’s little grace for pacing one’s self, little to no financial or social support for people who are trying to keep going and just can’t. “One of the most insulting things people can say is ‘Fight your illness,’” Misko said. “It takes so much self-control and strength to do less, to be less, to shrink your life down to one or two small things from which you try to extract joy in order to survive.”
Connecticut urgent crisis center for teens provides alternative to hospitals and wait lists
Late last month, Rachel, a mother in Connecticut identified by first name only to protect her privacy and that of her 8-year-old son, called his pediatrician’s office to get help guiding him back to summer camp. He’d been refusing to go and wouldn’t say why. She was hoping to get him help and was shocked when staff told her that not only could the doctor not see her son, but they couldn’t even offer her the names of behavioral specialists over the phone. The list would have to be sent in the mail, staff told her. “It just felt like one more barrier,” Rachel said. “And that list is full of people who may not have appointments for six months out.”
Fortunately, she told the Hartford Courant, her mother had heard of the Hartford Urgent Crisis Center (UCC), offering children and teens in mental health crises walk-in help beyond pediatricians’ offices and hospital emergency rooms.
It’s easy to notice something is different about UCC upon arrival. Treatment rooms are outfitted with bright bean bag chairs rather than hospital beds, inspirational quotes line the walls, and weighted blankets and vests are available to provide comfort. Throughout the four-hour visit, Rachel said someone from the UCC treatment team was in regular communication. “I felt seen, I felt supported, whereas with my pediatrician I felt abandoned,” she said. “The UCC’s really are the only place in Connecticut where you can go if your child is having a crisis.”
Providing others with the supportive experience Rachel and her son had is the goal, said Galo Rodriguez, director and CEO of The Village for Families and Children, the non-profit where Hartford UCC is housed. Its providers want to get families in and out within four hours, stabilized from their crisis and equipped with accessible community resources to support them moving forward. For now, youth can only stay as long as 23 hours, but more specialized rooms are under construction to offer longer-term care. “We are committed to making sure children know that when they are experiencing fear and crisis and anxiety that we’re here to prop them up,” said Vanessa Dorantes, commissioner of the state’s Department of Children and Families at the UCC’s official opening. “The village is steeped with clinical supports because mental health care is ‘not a one size fits all,’” Dorantes said.
Impressively, weeks after their visit, Rachel says the UCC is still in touch. “They’ve been calling every week to check in and see how we’re doing and make sure [my son] is connected with someone outside the UCC,” she said. “It really is holistic and thorough and they don’t just drop you after you go.”
For some low-income folks, full gender-affirming care is still hard to come by in California
On one hand, there’s good news: Medi-Cal, California’s version of the federal Medicaid insurance program for people with low incomes, is required by state law to cover all medically-necessary gender-affirming care. But, as Pasha Wrangell told California Healthline in a story carried by The Mercury News, that doesn’t mean care is easy to get. Wrangell, who is nonbinary and uses they/them pronouns, has gender dysphoria, a condition that causes severe psychological distress to people whose sexual identity does not match their sex assigned at birth. “It’s a sense of wrongness, like someone attached an arm to my head badly, and it just punches me in the face every time,” Wrangell explained.
For three years, Wrangell has been undergoing gender transition treatments to achieve a more feminine appearance. Part of the treatment includes electrolysis hair removal for their face, neck, and chest. “I see my face in the mirror, and anytime I have to deal with hair, it is uncomfortable. I hate seeing it,” they said. Though deemed medically necessary by their physicians, Wrangell has struggled to get to just half the hours of treatment their electrologist says they need – despite two and one-half years of electrolysis treatment. Accessing treatment requires lots of time and paperwork, as Wrangell’s health plan limits the number of hair removal treatments allowed at one time, requiring constant reauthorization. Besides that, there’s a shortage of medical providers within the network, prompting the alliance to contract with clinicians in multiple counties to meet demand.
Moreover, there’s the ever-present challenge of maneuvering care plans that don’t cover treatments deemed cosmetic. Medi-Cal isn’t alone there; most commercial insurance plans have the same policy. But what about if you can’t function in society without the ‘cosmetic’ treatment, asked Elana Redfield, federal policy director at the Williams Institute, a leading research center on sexual orientation and gender identity law and public policy. “If it’s affecting your mental health, and it’s affecting your life opportunities, and it’s affecting your ability to get a job and your ability to get housing, is that cosmetic?”
In other news…
Tributes continue to pour out for Sinéad O’Connor, the international star as known for her musical talents as she was for her outspoken nature and vulnerability. As long as the public knew anything about her, she shared her struggles with mental illness, making clear how her mental conditions impacted her art, her career and her personal relationships. She shared herself without shame.
In a poignant remembrance, The Guardian columnist Hannah Jane Parkinson wrote, “I don’t know how O’Connor died. But as well as her incredible music, her wit and verve and strength, her activism, she leaves a legacy of representation for those of us who know what it’s like to have their headphones confiscated in the inpatient wards, who know what it’s like to look in the mirror and see something not quite human. Not the hashtags or the reels or the self-diagnosis of ADHD after leaving dishes in the sink for two days (try weeks, try months); not the mantras written on a Post-it that are somehow supposed to assuage hours of daily skin-picking or a two-year waiting list. Sinéad O’Connor was a truth-teller. Perhaps her most visceral truth of all was how she showed us her suffering – and how she was desperate for it not to be in vain.”
As more research shows that psychedelics like psilocybin tend to reduce symptoms of treatment-resistant depression, the scientific community enters yet another debate: Are hallucinations absolutely necessary to get the full effect of psilocybin treatment, or can it work just as well without the trip? Dig further into the conversation with Cosmos magazine.
Physicians engage patients in constant conversations about treatment, but not enough about the non-physical side effects of care, argues Elsa Pearson Sites in this guest column in STAT News. There’s the financial depletion from treatments, even for those with health insurance. There’s the time patients spend driving from office to office, sitting at computers filling out paperwork. And finally, there’s the mental and emotional toll from not just the illness, but treatment, that can steal a person’s independence.
If you or someone you know is in crisis or experiencing suicidal thoughts, call or text 988 to reach the 988 Suicide & Crisis Lifeline and connect in English or Spanish. If you’re a veteran press 1. If you’re deaf or hard of hearing dial 711, then 988. Services are free and available 24/7.
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