I think people should hug all the time. I love to hug people. But I haven’t been able to for the last seven weeks. Being stuck alone in a small enclosed space, not even being able to go outside – it’s terrible. I have to work very hard to keep my emotional balance. Until last Thursday, I was managing somehow, but then things got really bad…
John Lucas, 57, lives in a tiny second-floor apartment in a low-income housing complex. On warm days, he opens all the windows and waits for the room to fill with fresh air – for John, it is the only way to feel that life continues beyond the confines of his room. Lucas has bipolar disorder, depression, and post-traumatic stress disorder (PTSD). He has attempted suicide five times in the last 40 years of his life. In addition to his serious mental health issues, Lucas has undergone multiple heart surgeries: doctors have performed bypass surgery, stented his coronary artery, and tried to improve the function of his left ventricle. Eight years ago, Lucas was diagnosed with prostate cancer. Such a medical history does not allow him to go out at all these days – necessary food is delivered to him by volunteers who leave the packages at the door.
“To be honest, I’m not afraid of dying of cancer. Or dying from a sudden heart attack – I had my first heart attack 14 years ago. I’m used to living with all that. But I’m afraid of dying from the coronavirus. Because that would be unfair. I’m a terribly “lucky” person. But you know what’s really unfair? Most of my health problems are hereditary. I have three brothers – all of them perfectly healthy. I’m the only one who inherited all this. And they never said thank you,” – Lucas pauses, smiles and adds. – Sorry, I have a terrible sense of humor.
Recently, one of John’s brothers offered him a Zoom call. I asked him, “Is it a video call? He replied – yes. But I don’t have a camera on my computer, tablet or iPhone. My phone cost me five pounds (about 460 rubles – BBC) – it’s such a weird device that makes funny noises when I try to talk on it. To which my brother said, “Oh well, forget it. Even before the quarantine, John’s life wasn’t full of communication: he’d exchange a few words with a clerk in a store, or a pharmacist in a pharmacy, or go for a pint of beer at the local pub where the bartender knows him; sometimes he’d manage to have breakfast with a friend. Now, John considers those days happy if he gets at least one phone call – even if it is a few minutes from the hospital to report test results. Last week, John had three happy days. We explain quickly, simply, and clearly what happened, why it matters, and what will happen next. Episodes End of story Podcast advertising
Loneliness is the main concern for Lewis, who is currently battling cancer. He is one of nine million Britons who admit to feeling constantly lonely, even in everyday life outside of quarantine restrictions. In the United States, three out of five Americans admit that loneliness has a negative impact on their health. In December last year, a message appeared on the country’s popular classifieds portal, Craigslist: “Does anyone need a grandma for Christmas? I will even bring food and presents for the children! I have no one and it hurts me a lot.” American professor of psychology and neurobiology Julianna Holt-Lunstad even concluded that the feeling of loneliness caused by social isolation is as damaging to a person’s health as smoking 15 cigarettes a day. Isolation negatively affects all people, both mentally healthy and those with various illnesses, because it implies a sharp change in the familiar way of life, explains Olga Boyko, clinical psychologist and research associate at the Department of Medical Psychology at the Scientific Center for Mental Health. This change causes people to feel lost, anxious, and depressed. “It is completely normal to have an emotional reaction, because the current self-isolation is really threatening lives – if not yours, then someone close to you,” says Boyko. However, she says, people with mental illness are more vulnerable in this situation – they need much more consistency in their lives and react more strongly to uncertainty.
Last year, John Lucas spent three months in the hospital after heart surgery. When he decided to self-isolate at home due to the coronavirus pandemic, he thought the experience would help him get through the quarantine. Lucas underestimated the importance of even fleeting communication: in the hospital, he was surrounded by doctors, nurses, and roommates with whom he could always chat. At home, he was completely alone, facing his bipolar disorder. “I feel like I am in prison. I try to gather all my thoughts together, but they continue to run chaotically in my head.
Last Wednesday, John received a phone call from the hospital. It turned out that the nurse would not be able to come to his house to do the tests, the results of which would determine further cancer treatment. Lucas would have to come himself. The fear that he might catch the coronavirus there has turned to panic. “So I felt incredibly depressed, lonely and unhappy. And after a couple of hours – incredibly happy. And when I’m that happy, you know, bad thoughts come to my mind. On Friday I had a terrible desire to go to the store and buy a bunch of beer and drink it all at once. I know it’s harmful. But my brain insisted, “If you really want it, you have to go and drink it. Such a change in state is a typical symptom of bipolar disorder: manic phases, accompanied by elevated mood and general excitement, are replaced by depressive episodes, which manifest as suppression, slowed thinking, and motor retardation. To cope with loneliness, John writes e-mails to friends and family. “But I get extremely nervous when people don’t respond. I’m afraid I’ve annoyed them too much, that I’ve said something wrong or made a stupid joke.
The authors of a scientific study concluded that loneliness and social isolation increase the risk of heart disease by 29% and the risk of heart attack by 32%. Samantha Brooks of King’s College in London outlines the main stressors of quarantine. The length of the quarantine is the most important factor: “Research shows that the longer the quarantine, the greater the risk of psychological problems, the development of post-traumatic stress symptoms, manifestations of avoidance behavior and anger. The fear of infection and the associated concern for one’s own life and the lives of loved ones is another factor that increases risk. Moreover, Brooks’ study concludes that these fears are significantly heightened for people who observe quarantine. John Lucas admits that although he has similar feelings, all his hopes for the future are not tied to himself – he worries about whether his brothers will get sick, whether the small business will survive, whether the bartender he knows will be able to keep the pub, what will happen to people who have lost their jobs. He prefers not to think about himself. Dr. Samantha Brooks warns: “If a person has a mental illness, the quarantine does not end for them the moment the restrictions are lifted – the patient may continue to have severe negative emotional experiences for up to six months.
22-year-old Zhenya loves water and can watch with interest as it flows from the tap. Zhenya also loves blowing bubbles and watching water experiments that volunteers entertain her with – it all seems very exciting to her. Zhenya lives with her mother in Moscow. As a child, doctors diagnosed Zhenya with Liechtenstein syndrome, a rare genetic disorder caused by the absence of a chromosomal fragment. This disorder is sometimes called “cat crying syndrome” because the cry of children with this syndrome resembles the meow of a cat.
Zhenya doesn’t speak and needs constant care. She cannot understand what “self-isolation” means, why she cannot go outside, why the world around her has changed. That is why it was so difficult for her to be suddenly separated from her mother. A few weeks ago, Nadezhda, Zhenya’s mother, fell ill. Doctors first thought it was bronchitis, but eventually diagnosed coronavirus and took her to the hospital – Nadezhda resisted until the last moment, worried about her daughter, but there was no choice. Volunteers from the charitable foundation “Life Path” were left to take care of the girl. One of them, Marina Bykova, has known Zhenya for a long time. Once the four of them even went on vacation with their mothers. Marina calls Zhenya her close friend. Marina says that after her mother was taken to the hospital, Zhenya would sometimes go into her room, stand there, look around, and sigh sadly. When Nadezhda’s condition began to stabilize and they were able to have a video call with their daughter, Zhenya didn’t understand what was happening. The word “pandemic” meant nothing to her. So when she saw her mother on the screen, Zhenya suddenly started crying and ran into another room, feeling insulted that her mother had disappeared. Marina says she enjoys spending time with Zhenya, but admits that the level of constant involvement is so high that it takes a lot of physical and emotional energy.
“Thanks to the quarantine, many people understand what it means to sit in the house, not being able to go anywhere, and spending 24 hours a day with your family. Self-isolation gives some understanding of what families with mental disabilities go through. But for them it is not temporary, they live like this for decades. And even if there is an occasional chance to go somewhere, often there is simply no strength left,” says Marina. Sarah, from the United Kingdom, has a different perspective on her experience of caring for people with severe disabilities. This is not the woman’s real name: “There is always a stigma attached to mental illness. And although I feel comfortable talking about my own experience, it is inextricably linked to the life of my brother, who cannot make independent decisions – whether he wants to reveal his real name. Sam, Sara’s brother, has schizophrenia, which means that he regularly experiences hallucinations accompanied by cognitive and perceptual disturbances. Sara says her brother is often aggressive. He spends most of his time in hospitals, but when his condition stabilizes a bit, he is discharged home. He was due to be released just as the British authorities announced self-isolation, so Sam is forced to wait out the quarantine in the hospital.
“If I had to describe my experience of caring for my brother in one word, it would be guilt. I constantly feel like I should be doing more. I feel guilty that I can’t just make him better. I feel guilty that good things are happening in my life and he isn’t. I feel guilty that I have friends while he spends so much time in hospitals. I feel guilty that I am valued for my talents at work while society looks at him with a mixture of stigma and fear,” says Sarah. After 20 years of caring for her brother and helping her husband and father with serious health problems, Sarah turned to a psychologist herself. Often, people caring for an ill loved one in isolation lose the resources that once sustained them: there are no more face-to-face meetings with friends and acquaintances, often no opportunity to go for a walk. And more energy is needed to provide care – both for oneself and for a loved one. Clinical psychologist Olga Boyko says that for such people “it is important not to expect heroic deeds from themselves and to see what brings at least some satisfaction, joy and relaxation.
Nina spent her entire life in closed institutions and never lived in a family. As an infant, she ended up in a foster home, then an orphanage, and at 18 she was transferred to a psychiatric and neurological institution (PNI). On Mondays, Nina had a phone, and she regularly exchanged voice messages with Arina Muratova – her friend and volunteer who often visited her. When asked, “How are you?” Nina usually replied: “I’m fine.” But when the coronavirus reached Russia, she began to tell Arina: “I am very unwell.
As a result of the pandemic, the conditions in the boarding house have become stricter: if before patients were allowed to move around, now the doors to the rooms have been closed. “In our cafeteria, all the tables have been removed. Now everyone eats on the floor,” says Nina. When Arina asked Nina if she wanted to move in with her temporarily, Nina happily agreed. “I see in myself the strength and resources to do something,” Arina explains. “And I can make someone’s life a little better, someone I’ve known for almost four years. There was a moment when I thought: maybe I miscalculated my strength? Quarantine is so difficult. But I realized that I could do it. When asked how she feels, Nina says she is happy to be with a loved one: “The most important thing for me is to be here with a friend.” She is also very happy to have the opportunity to go to a separate room and lie alone, as well as to shower alone – in the boarding house, patients wash in groups. “I don’t know what specific diagnosis Nina has – it’s a medical secret, and PNI has the right not to disclose it,” says Arina. “But here’s what seems important to me. For example, Nina has problems with arithmetic: she finds it difficult to understand that I’m older than her, even though she knows how old we both are. But for me the question remains open: is this related to her mental peculiarities or to the fact that she never went to school? I would say it’s the latter. In order to live together during the quarantine, Arina had to set some rules. When she gets a work call, she says: “I’m in an important meeting.”
And then Nina understands that Arina cannot be distracted.
“We have a special notebook where we write down what Nina can do in the moments when I am busy. She goes through a list of several items and chooses one. My phone calls also have levels. For example: “There’s a meeting now, but it’s not that serious” or “And now it’s just a friendly call, and you can join in. Arina says that she was not ready to face misunderstandings in answer to the question: “What do you want to do?” Most often Nina answers: “I don’t know.” This is very understandable: after all, there is no such choice in the orphanage. But that is why it is necessary to constantly think of things to do. Arina hopes that one day Nina will learn to express her own wishes and desires to the world. But perhaps that is not the main problem she will face during these months of quarantine. “I knew I would have to deal with it, but I didn’t think it would be so soon… Even now, Nina says from time to time that she doesn’t want to go back to boarding school. I recently had a birthday: despite the isolation, friends sent me balloons, flowers and gifts, we had a video call. And Nina began to worry about her birthday in August: “How will I celebrate it?” Obviously, I have to start the process of psychological preparation for my return. But it’s really hard for me emotionally to hear this. Arina says that the most important thing in life with a person with mental peculiarities is not to blame yourself when you lack strength.
“No strength – and there is none. No one needs you to burn out right now. Don’t blame yourself. You need to assess your resources. And don’t be afraid to ask for help and support. Many Russian families with children with autism are now asking for help and support – but already from the government. An initiative group has even started a petition asking for permission for such children to go for walks. In the UK, for example, everyone is allowed to take a walk outside once a day while in isolation. However, people with mental disorders and autism are allowed to leave their homes an unlimited number of times. They are also allowed to travel any distance from home if, for example, special outdoor exercise is needed to maintain their health.
Lisa and Quarantine: How Coronavirus Affects the Lives of People with Autism “We shared with other mothers. One child simply stopped interacting and started banging his head against the wall. One child withdrew completely, stopped responding to his family and started eating wallpaper,” said Valentina Farzan, one of the petition’s authors in Russia. “When children were denied the opportunity to go outside – except for trips to the nearest store or pharmacy – their autistic traits suddenly intensified, and any activity with them became impossible. My child’s condition deteriorated to such an extent in five days that I almost lost my mind. The petition was sent to the presidential administration. From there it was forwarded to the Moscow and Moscow Region governments. The authors of the petition have not yet received a response from the authorities.
Drawings by Olesia Volkova