The faces in the fog of 'long COVID'
Updated 15 April
Teresa Dominguez, 55, was doing her weekly shopping near her home in Collado Villalba, north of Madrid, when she realised she was wandering aimlessly, feeling lost in the aisles and without a clue of what she needed.
She paid for what she had already picked and left.
The "mental mist", as she describes her inability to concentrate, and permanent fatigue after performing the simplest of everyday tasks have constrained her life for the past year, since her March 2020 coronavirus infection developed into what doctors call a post-COVID syndrome, or "long COVID".
"I feel like my 91-year-old mother physically," says Dominguez, a mother-of-two and a social worker specialising in disabilities, who has been on medical leave since November.
Permanent fatigue, daily fever, muscle and joint pain, insomnia and constant mental lapses have kept 42-year-old Amaia Artica from doing the job she loves at a nursery school since she got infected with the coronavirus during the first wave of the disease. She suffers from daily low-grade fever. "My family doctor has been very supportive of me throughout this ordeal, but not all doctors have been that understanding. A specialist doctor told me to stop taking my temperature, that if I didn't pay attention to it, it would go away because it was all in my head."
A recent survey by the Spanish Society of General and Family Physicians (SEMG) - which interviewed 2,120 people of whom 1,834 had symptoms compatible with the disease - found the typical profile of a post-COVID syndrome patient was a 43-year-old woman with 36 symptoms on average.
Pedro Sanchez-Vicente, a 56-year-old event organiser, spent 100 days intubated in an ICU unit after getting infected with COVID in March, 2020. But after his release from the hospital he started developing many of the symptoms associated with long COVID. "I'm not your typical long COVID case, because most of those patients haven't been hospitalised or not for too long, unlike me. But I share with them the mental mist, the paresthesia, the hearing problems, conjunctivitis, eye herpes. You could say I'm a hybrid," he said. "When I returned home I saw the armchair my family had bought for me as a surprise. I have pretty much been living in that armchair for the past year. Even now I find myself sleeping in it for hours every night because I have difficulty breathing in bed."
While severe COVID-19 infections are more frequent in men, long-haul COVID seems to affect women more - they accounted for around 80% of the cases in the SEMG study.
Eight women, and two men, spoke to Reuters about their experience of long-COVID, and sat with a photographer for portraits shot through a "fog" of blue plastic to visualise how the condition made them feel.
Susana Matarranz, a 44-year-old primary school teacher, gets emotional when she explains how much she misses her students. Matarranz got infected on March 1, 2020. At first, she only noticed the loss of smell and taste, but soon afterwards she started suffering from severe stomach problems and acute joint pain. "My right collar bone is swollen, I can barely lift my arm, I feel like I have aged prematurely," she said. Matarranz returned to work in September, but got infected a second time in November and hasn't been able to continue teaching ever since. "The part of me that is my profession is empty, like that blackboard. A piece of my heart, which are my students, whom I love dearly, feels empty and I feel like at this moment there's nothing I can do to fill it in."
Like Dominguez, they often report being unable to do routine tasks such as shopping or cleaning. For some, even watching a movie can be exhausting.
The World Health Organisation said in February understanding the post-COVID conditions was "a clear priority", while pointing out that "regrettably, some (patients) were met with disbelief or lack of understanding".
Arias resorted to leaning on her support network. "They don't judge me, and they have helped me learn to live with this the best possible way I can," she said. Arias got a friend to design a tattoo for her to remind herself of the importance of her network of family, friends and colleagues. "It signifies growth and love, the love and support I feel from all the people who are helping me get through these difficult times."
Several women who spoke to Reuters, including 23-year-old anthropologist Shalini Arias, said doctors initially shrugged off their symptoms, while bosses or colleagues sometimes thought they were exaggerating.
"I've felt doubly misunderstood, as if I were a hypochondriac and as if I were a high-maintenance woman seeing the doctor because I've nothing else to do," Arias said.
Jorge Martin, 44, the head of a higher-education association, has been off work for more than a year due to long COVID. He developed double pneumonia when he got infected with coronavirus during the first wave of the disease. He has been battling with cognitive difficulties and a long list of physical problems ever since. "I would not have pictured myself at my age using rehabilitation tools, but I've welcomed them because they help me with my physical aches and provide me with some relief from the distress of looking at the calendar and realising that a year has gone by and I'm still not recovered."
The WHO says roughly one out of 10 coronavirus patients remains unwell after 12 weeks, and many for much longer.
Two other studies, by Britain's Leicester University and the International Severe Acute Respiratory and Emerging Infections Consortium, have suggested women in their 40s and 50s are more at risk of long term problems following COVID-19 infections.
Diez sometimes feels like a rookie at work despite her 20-year experience and has invented routines to remember tasks she used to perform automatically. She feels she has lost part of her identity, but she tries to stay positive. "The first time I tried to take a swim in my pool, thinking that the water would help me improve my symptoms, it was very distressing. I started feeling out of breath the more I was submerging in the water. I had to sit on the steps and let the water surround me no higher than my waist to regain my breath."
Year-long symptoms have made Maria Eugenia Diez, a 43-year-old nurse, give up exercise and forego medical conferences, where she has trouble concentrating.
She sometimes feels like a rookie at work, despite her 20 years experience, and has invented routines to remember tasks she used to perform automatically.
"It happens to me when I drive. I'm much clumsier. I have to think every day how many gears the car has, where are the rear-view mirrors, the wiper and the water, or the pedals," she said.
Kemp had to give up dancing, swimming and her daily long walks due to the permanent fatigue she experiences. "The first time I managed to walk as far as the park by my house, I felt like I was flying. It was only a few meters away, and I had to sit to rest, but I felt like the whole world was opening up to me. I used to go on foot everywhere and it was as if I was on my way somewhere again. I had this idea that my recovery was ahead of me, later I realised that was not the case."
Anna Kemp, a 51-year-old Briton living in Spain for almost 30 years, says the condition affected her ability to communicate in Spanish and she stopped watching complex TV shows because she could not follow the plot.
SEMG vice-president Pilar Rodriguez Ledo said her research team was in the initial phase of studying whether hormones could be a factor in long COVID, since pregnant women appear to be less susceptible, or whether the answer is in a gender-specific response of the immune system.
Perez leads a daily mindfulness online class with other people who suffer from long COVID. "If it were not for meditation I might have already been put on antidepressants." "One day I tried to at least go down the stairs and I don't even think I made it two floors down, I was in so much pain. I felt so disappointed. Am I ever going to be able to live a normal life again?"
Beatriz Perez, a 51-year-old computer engineer, used to go trekking on weekends, but now is rarely able to complete her personal challenge of walking all the way down the stairs from her eighth-floor apartment, not to mention up.
Permanent fatigue and forgetfulness have kept her off work, and she says "the worst thing is living with the uncertainty" of not knowing when or if she will recover.
Such fears trouble many, but nurse Diez is trying to stay positive.
"I'm adapting to what I have, I will enjoy what I have now and I can't keep thinking about what I had before," she said. "It's hard because I miss it a lot."
PHOTO EDITING GABRIELLE FONSECA JOHNSON; TEXT EDITING ANDREI KHALIP AND ALEX RICHARDSON; LAYOUT JULIA DALRYMPLE
Nuria Sepulveda, a 44-year-old self-employed worker who co-owns a courier franchise, got sick on March 12, 2020 and she had to visit the emergency room on several occasions for symptoms that ended up being diagnosed as double pneumonia, bowel bleeding and urine infection among others. She tried to return to work in November, but the fatigue was so overwhelming that "3 hours of work felt like a 12-hour work day." "When I felt the fatigue that had been dragging me down for months was getting a bit better, I got my bike out. It was September, 28. I will never forget it, it was the first day I was able to practice sports again. I couldn't help crying," she said. Sepulveda believes we have two lives, the second one starts when we realise we only have one.