She hadn't slept more than two hours a night for at least a month before her appointment. She had uncontrollable Parkinson's-like tremors in her arms and chest that made it impossible to sleep, just some of the many symptoms she developed after a coronaviruses infection in April 2020.
The doctor brought up his own struggles with depression when he was shown a video of the tremors by the couple.
His wife told him when the doctor left the room. He tried to comfort her, as she told him that she had no path forward.
The next day, she killed herself.
Was that the final straw? I don't know, but I know that he wasn't believing her.
Two years into the Pandemic and long COVID is still a misunderstood and underresearched problem. It affects up to 30% of the millions of people who have contracted the coronaviruses.
It is possible for both adults and children to experience long COVID when symptoms or new health conditions occur months or longer after the initial infection. Symptoms can affect nearly any organ system, including the heart, lungs, kidneys, brain, eyes, or skin, and they can vary widely and include fatigue, headaches, insomnia, heart palpitations, brain fog, muscle pain, and more.
That is one reason why people with long COVID are often ignored and dismissed by the medical professionals they seek answers from. We asked people to share their stories, and not feeling heard is one of the most common themes unveiled across more than 300 responses.
A nurse told Sydney to suck it up. George was told by a cardiologist that he was imagining things after rushing to the hospital two years after he thought he had a heart attack. When trying to exercise through her fatigue, doctors told her not to think of illness. His doctor doesn't believe in long confession because he recovered from his own issues.
The healthcare system is failing patients in other ways. People said they have been bombarded with hefty medical bills, unsuccessful insurance claims, and medications that can make their symptoms worse, as well as rejections from clinics studying long COVID because they have been overwhelmed with demand.
Lauren Scungio, 30, of Massachusetts, said that doctors are busy and drained from dealing with the Pandemic for over two years.
She said that many doctors are treating symptoms using a piecemeal approach because they don't know how long COVID is.
Scungio said that at best, he has experienced some temporary symptom relief from this approach, but at worst, it has made things worse for him and may be paving the way for irreversible damage.
People of color, people with chronic illnesses, and those with larger body sizes have said they are not taken seriously by medical professionals when talking about their pain or potentially dangerous symptoms. It has been a similar experience with long COVID for many.
Diana Berrent, founder of Survivor Corps, one of the largest organizations that offer education and resources for COVID patients and connects them to medical experts and research, said that people with post-COVID symptoms often know more about the issue than their healthcare providers.
There is a lack of information and understanding on the patients side. Patients have become experts.
After getting COVID in January, the loss of her sense of smell and taste caused her anxiety and depression, and she only recently recovered her sense of smell and taste. Her doctors don't focus on her symptoms. Her weight is what it is.
She asked that we use her middle name to protect her privacy. I have dealt with depression and anxiety for a long time, and those moments of feeling belittled and unheard is crushing.
She said that it was like standing there with a knife in her chest and asking if she should eat lettuce with every meal.
The one theme shared by all 200,000 members of the Survivor Corps is that medical professionals don't believe them or take their symptoms seriously.
Today was an amazing day, one of the things that we hear over and over is. She said that her doctor finally believed her.
In June of 2020, Grant had to go to the emergency room twice in one week, and he had a burning sensation in his chest that felt like an electric shock.
He was sensitive to spicy foods and had a painful sensation in his limbs. His doctors told him that it was his anxiety that made him feel like he was going to black out.
It made me feel like I was losing my grip on reality or that I was going insane. The only thing that kept me from thinking I was insane was seeing stories of people who had the same symptoms as me.
I had not cried in years, but I would leave these appointments and sit in my car and cry because it felt like my symptoms would never go away or that anyone would ever be able to help me.
Crystal Perkins felt the same way when she was blamed by her doctors for her parosmia, a condition that distorts how foods and smells are perceived. Cottage cheese and cream cheese bagels were the only things she could eat.
The Kansas resident said that even though she gave birth a year ago, most foods still taste like garbage.
The doctor never acknowledged my symptoms even when I asked. Perkins said that her doctor told her that she was faking her symptoms, and that everyone around her made her feel like she was faking her symptoms.
The director of the Post-COVID Assessment and Recovery Clinic at the University of Pennsylvania Perelman School of Medicine said that part of the challenge with long COVID is that we are all kind of learning on the fly.
There are no tests that can give clear diagnoses for long COVID, so it's likely clinicians who aren't really helping patients.
He said that this kind of dismissal was more common earlier in the Pandemic when less was known, but that a lot has changed over time as awareness has grown.
In March 2020, Maya was on a call and developed a severe breathing problem. She had to leave her apartment in California so emergency responders could find her.
Young people don't die of cancer. You don't have to go to the hospital. Medical personnel told her to clean a drawer. More than 15,000 people in her age range have died of COVID so far. They concluded that she had a panic attack.
Over the course of months, he couldn't breathe and developed a chest pain. Her doctor said that her scans were normal. A pulmonologist told her to relax.
It is the responsibility of the medical community to produce resources for primary care clinicians to learn more about this condition because it is so new and so many people do have it.
After a moderate coronaviruses infection in March 2020, Gillian Lizars has been dealing with nausea, light and sound sensitivity, tinnitus, cognitive issues, temperature dysregulation, fatigue, and body vibrations and pain. Lizars worked out five to seven days a week.
She said it feels like she has the flu every day, with her latest test showing she uses oxygen.
I know not everyone has a great experience with their doctors, I haven't either, and my medical team hasn't always been perfect, but bottom line I know they are trying their hardest with very little resources available. There are too many people in need of help.
M. King, who prefers her first name to remain private, is frustrated by the fact that little doctors can help her. She went from running 10-mile races without training to a sedentary lifestyle due to fatigue, GI problems, poor memory, muscle numbness and twitches, and depression. In April 2020, she had a mild COVID case.
I can tell my doctors don't like having to tell me, and I will tear up as I leave their office.
She said that she was terrified about her future and that she was told these things would go away with time.
You can take steps to ensure you get the medical attention you want and need if you interact with a doctor that isn't friendly.
Berrent said that patients need to be their own advocates.
First, talk with your primary care doctor about what you're experiencing, and don't shy away from sharing what you've learned online from long COVID communities. You will have different symptoms that may take more than one appointment to address, so try to establish a continuous clinical relationship with your medical team.
It can be hard in one quick visit to get to the bottom of all those, and a lot of the treatments tend to be more trial and error.
If you feel your doctor isn't taking you seriously, you can try another doctor or go to a COVID clinic. This may not be the easiest thing to do. There are certain criteria that some locations have.
You can find post-COVID care centers in your state, as well as federal resources and research, on the Survivors Corps website.
Seeking care with a mental professional and joining a support group can help connect you to others who can help you with your issues. Berrentt said 18% of people in Survivors Corps have experienced suicidal thoughts.
If you find you need to take your medical care in a different direction, experts say you should monitor your progress.
It has been helping Kate to stay positive. She lost her baby during her bout with COVID-related pneumonia and has been dealing with it ever since.
A friend told me that I should celebrate what I can do this week since I couldn't do it last week because I was sick.
She said that she found a way to Irish step dance while seated for St. Patrick's Day.
She learned of new leads about her high heart rate and blood pressure during her respiratory rehabilitation sessions.
For Maya, it took over a year of tests to get several diagnoses, including conditions and disorders of her heart, blood, and vocal cords.
As the world moves on to living with carbon dioxide, consider for a moment what that means for those of us who have never experienced it.
The National Suicide Prevention Hotline is in the US. TheTrevor Project provides help and suicide-prevention resources for LGBTQ youth. Befrienders Worldwide has other international suicide helplines.