COVID-19 STORIES

The COVID-19 pandemic has brought so many changes to our lives. Some, like masks, isolation, and business or school closures, are quite apparent. Others are more subtle. And some changes have affected only certain members of society. Many people are struggling to understand what COVID-19 will mean for us in the long-term. Some of us are coping with, caring for, or trying to protect, loved ones – or dealing with terrible loss. In such complicated times, stories may help listeners to understand what this pandemic means to our communities. Therefore, we have created this “special collection” of narratives that address life and health during the COVID-19 pandemic. Patient advocate and medical expert responses to the stories are also shared in the accompanying videos.

Story Booth, storytellers have often noted that one reason they share stories is to help others who are facing a similar situation to feel less alone. We hope that these stories will help make such connections at a time where so many people feel isolated. Storytellers have also identified situations where health care is working well and areas where there are gaps. A primary Story Booth goal is to foster a better understanding of these situations – and in doing so, to help those working in health systems and health research to adjust patterns of clinical care as needed to promote health.

The Story Booth team is extremely grateful for the opportunity to hear these stories and is committed to drawing attention to the storytellers’ voices. We hope that you will listen and learn too, and even consider sharing your own perspective.



CALL TO RESEARCHERS

Please spend some time listening to the stories that our community members have so generously shared about their experiences related to COVID-19. We hope they inspire you to ask research questions to address concerns raised or amplify approaches to public health and care delivery that people have found to be promising. Plus, let us know if you’d like to build a stakeholder-engaged team! Working together, we can overcome COVID-19.

PATIENT STORY

Five grand..financial burden...as a nursing student ...straight from the hospital.

This storyteller shares the challenges to getting back on track, after recovering from COVID-19.

April 10, 2020 | 24m 00s
CAREGIVER STORY

...that we have never felt like a number.

This storyteller shares how the care of nurses and doctors made supporting her spouse through lymphoma treatment.

April 10, 2020 | 18m 00s
HEALTHCARE PROVIDER STORY

I saw a whole side of my community, I've never seen.

This storyteller explains the steps him and his community have taken to protect everyone during the COVID-19 Pandemic.

April 13, 2020 | 27m 00s
PATIENT STORY

Nobody ended up helping him the way he helped other people.

This storyteller shares the harrowing experience of a family member passing due to COVID-19, while also caring for her mother from afar.

April 15, 2020 | 18m 00s
CAREGIVER STORY

...it was as if she was a new patient...

This storyteller shares her experiences as a caregiver to her loved ones, as well as, the transition to long-term care.

April 16, 2020 | 25m 39s
PATIENT STORY

Now that I've spent the time and the money, I'm really excited.

This storyteller shares the challenges of seeking mental healht treatment for anxiety, and the transition into tele-health during the COVID-19 pandemic.

April 17, 2020 | 19m 00s
HEALTHCARE PROVIDER STORY

...and it's always taking away from your safety, instead of adding to it.

This storyteller shares the challenges of working as a surgery technician , during COVID-19, and the subsequent changes that have happened.

April 20, 2020 | 21m 00s
PATIENT STORY

I think it changes us in how we appreciated interactions with some of our friends.

This storyteller shares how he has coped with social isolation, during COVID-19 social distancing, being at-risk.

April 21, 2020 | 12m 00s
PATIENT STORY

...and last weekend it really hit me, I've been in here a long time.

This storyteller shares the challenges of once being very active in the community, to social distancing due to COVID-19 concerns.

May 12, 2020 | 12m 00s
PATIENT STORY

...you really felt this sense of isolation.

This storyteller shares the impact COVID-19 has had on his work, physical activity, and social isolation.

May 15, 2020 | 16m 00s
PATIENT STORY

...we've gotten nothing.

With quarantine extended because of COVID-19 , this storyteller shares his experiences with social distancing, medical professionals, and the employment consequences.

May 18, 2020 | 28m 00s
PATIENT STORY

It's that same stigmatization of disease

This storyteller explores her diagnosis and treatment for lung cancer and what the experience was like as an older, single woman during the COVID-19 pandemic.

May 19, 2020 | 21m 00s
PATIENT STORY

It was the most supportive thing, I could tell him anything.

Having been asked to take time off from work due to being a t risk of contracting COVID-19, this shares her experiences when of when her husband begins to have them.

May 20, 2020 | 36m 00s
PATIENT STORY

So I said 'Thank you, but no thank you'.

This storyteller shares the changes you should make when it comes to severe high blood pressure, and the alternatives you can explore when wanting to reduce pharmaceuticals and after surgery.

May 25, 2020 | 24m 00s
PATIENT STORY

..be patient we'll get around to you, but three weeks off at a time and not hearing anything is frustrating

After a birthday celebration , this storyteller starts to suffer from severe abdominal pain, and after confirming that surgery is necessary, everything gets put on hold with concerns of COVID-19, leaving this man suffering for an undetermined amount of

May 29, 2020 | 16m 00s
PATIENT STORY

I'm more important than the current project we're working on.

This storyteller shares how she maintains her asthma through yoga and diet,during COVID-19 social distancing.

May 26, 2020 | 12m 00s
PATIENT STORY

...I am very capable of managing whatever the consequences may have been.

A woman shares her luck when it came to surgery before the COVID-19 stay at home orders, her familial relationships having grown stronger for it.

May 28, 2020 | 18m 00s
PATIENT STORY

That's the worst thing you can do with a person with a disability is to have their value not matter, to act like they can't do for themselves, to act like they are disabled. Meet them where they are,

This stroyteller shares her story of what her experiences are like being legally blind during the COVID-19 pandemic.

May 28, 2020 | 27m 00s
PATIENT STORY

Getting the test felt amazing, to get a positive result, it was insane just how justified I feltfor having stayed at home for so long and be so adamant about it.

This story teller tells his story of having COVID-19, his symptoms, and the difficulties he encountered trying to obtain a COVID-19 test.

May 28, 2020 | 24m 00s
PATIENT STORY

"Do what you need to do to protect yourself"

This storyteller shared her experience living through the COVID-19 pandemic as someone who is HIV positive and caring for her aging mother.

June 03, 2020 | 17m 00s
PATIENT STORY

"I felt like I was just a case, rather than a person who had not only physical needs but mental and emotional needs."

This storyteller shares her experience with Ulcerative Colitis, including her long time struggles with symptoms prior to diagnosis and her eventual decision to get J-pouch surgery. She also discusses mental health and the need for doctors to consider the

June 05, 2020 | 18m 00s
PATIENT STORY

"It's not that much fun to do anything any more, we don't have any of the things we usually have together"

This storyteller tells her story about what it is like to live in a residential living facility during the COVID-19 pandemic.

June 10, 2020 | 25m 00s
PATIENT STORY

"I lost my faith in my normal provider, he dismissed what I had to say, he did not notice, he did not allow me to be a partner in my healthcare knowing what I know and experiencing what I experience."

This storyteller describes his experience with patient provider communication and the importance of listening to what patients are saying.

June 17, 2020 | 18m 00s
PATIENT STORY

...as we're talking about health rather than illness, that's a good thing.

This storyteller shares how commiting to a life of having a positive outlook, doing the things you enjoy, and taking the time to educate yourself on current health related materials, will lead to sustainable healthy lifestyle.

June 18, 2020 | 22m 00s
PATIENT STORY

"I think that's the most hurtful thing in seeing everyone kind of disregard the masks and the hand washing is that it feels like they're disregarding me and the worth of my life as well"

A woman living with multiple health conditions describes her experience in quarantine during the COVID-19 pandemic.

June 23, 2020 | 12m 00s
PATIENT STORY

"My Philosophy is, you take what comes, you deal with it, and you move on."

The story teller tells about her experiences with lung cancer and keratosis and the side effects she experienced as a result of radiation treatment.

July 01, 2020 | 14m 00s
PATIENT STORY

"It dawned on me a few months after I was over all of this that I could have died, and I didn't, and I'm very fortunate for that."

The storyteller tells his experience with being diagnosised with COVID-19 and how it affected his life.

July 13, 2020 | 15m 00s
PATIENT STORY

"The potential of the illness hasn't really changed me or changed us, I'm a three time cancer survivor so there's not much that scares me, I'm not scared of COVID but I'm causious."

Storyteller tells her story of being a three time cancer survivor taking chemo therapy during the COVID 19 pandemic.

July 14, 2020 | 17m 00s
CAREGIVER STORY

"So variety, physical activity, intellectual stimuation, inspiration, and spiritual devotion characterized my regimine of self care"

This storyteller talks about his experiences in being a caregiver to his community and what he has done to adapt his lifestyle during the pandemic. He also addresses issues such as food shortages, unemployment, and politics at this time.

July 16, 2020 | 16m 00s
PATIENT STORY

...she was real matter of fact, 'you were a non-event'.

This storyteller shares how recovery after having COVID-19 has pushed her to question the healthcare system, as well as gaining more compassion for her well-being.

July 29, 2020 | 43m 00s
PATIENT STORY

I would say the biggest challenge in the beginning was managing your own fear...

This storyteller shares what they've experienced as a family nurse practitioner during the COVID-19 pandemic.

July 30, 2020 | 36m 00s
PATIENT STORY

If you can't do it, and you can't breath, then you can't help anyone first.

This storyteller becomes a support for their sister after a suicide attempt , and shares the challenges of beign there fro a loved one during a pandemic.

August 12, 2020 | 19m 00s
PATIENT STORY

There's just fewer specialist, fewer resources, there's fewer trained practice...

This storyteller explains how access to the competent inexpensive healthcare is a privilege for some, when it should be a right for all.

August 14, 2020 | 24m 00s
PATIENT STORY

...and it's still important to try and at least interact with them.

This storyteller shareshavign potentially had COVID, yet was able to get testing because of not having met criteria and her concerns with it.

August 17, 2020 | 17m 00s
PATIENT STORY

...if you contract this, the chances of you becoming very sick, is real.

This storyteller shares the measures taken during the pandemic due to being at very high risk of contracting the virus.

August 19, 2020 | 16m 00s
PATIENT STORY

And as we go forward...that needs to be something we address...

A storyteller shares their experience with the Coronavirus, recovery, and the response from healthcare since the pandemic.

November 18, 2020 | 32m 00s
PATIENT STORY

…I find it ridiculously organized...greedy as far as the corporate structure.

This storyteller shares that they ease in which they were able to maintain their health, isn't what others experience, in fact the healthcare fails everyone.

December 02, 2020 | 44m 00s
PATIENT STORY

…she never complained, and when she complains,they say 'Oh, that's okay , that's normal.', and no it wasn't.

Having seen generations of women in her family diagnosis with cancer, this storyteller shares making the hard decisions in prevention.

December 14, 2020 | 21m 00s
HEALTHCARE PROVIDER STORY

...it felt like my days didn't necessarily end at 5 o'clock.

A school board therapist shares the different responses regarding COVID-19, from patients , as well as the work and life-style changes.

December 16, 2020 | 17m 00s
PATIENT STORY

...if you can't find it, you can't get rid of it, and it get's worse.

This storyteller shares the various health care they've had during COVID-19. and changes implemented.

December 18, 2020 | 15m 02s
PATIENT STORY

...this is a time where you can work from home...

This storyteller shares her journey through mental health and the challenges with maintenance during the pandemic.

January 06, 2021 | 21m 00s
PATIENT STORY

"Finally someone is listening to me..."

This storyteller talks about her struggles finding physicians who listened and took her concerns seriously after having symptoms that pointed to Celiac's Disease and thyroid complications. She wants physicians to consider a patient's history and daily rou

January 15, 2021 | 31m 00s
PATIENT STORY

"It's a sad statement but a true statement...sometimes it's not what you know but who you know, and it can make a difference."

A storyteller tells her experience as a patient and caregiver and discusses her experiences with back pain/surgery, atrial fibrillation, arthritis, and mental health. She talks about ways that she maintains her health through stretching, appointments, and

January 20, 2021 | 34m 00s
PATIENT STORY

"If something is bothering you and won't go away, go right away...don't wait a year"

A storyteller talks about her surgery and being a caregiver for her husband's surgery while explaining things she does in daily life to maintain her health. Also, she discusses how the COVID-19 pandemic has allowed her to slow down and appreciate these ac

January 22, 2021 | 19m 00s
PATIENT STORY

"I literally woke up one day with sores, and you are telling me essentially to chill out and that I don't need medication"

A storyteller talks about her experience being African American while seeking proper care from the healthcare community. She talks about the impact of race on the quality of care she has received and her steps to ensure she has a doctor who fully listens

January 27, 2021 | 18m 02s
PATIENT STORY

"I don't remember what it's like to not be in pain"

After receiving surgery for spinal scoliosis in early adulthood, this storyteller talks about the post-surgical complications of spinal stenosis and nerve damage later in life. He talks about the recovery process of the initial surgery, the symptoms he ex

February 05, 2021 | 27m 05s
PATIENT STORY

"I have been successfully treated for depression for the last 23 years, but I feel like I have been depressed my entire life until that point."

In this story, a participant discusses her experience with depression, hip surgery, and a condition that is a precursor to blood cancer. She also discusses the difficulties of getting older and availability regarding the covid vaccine.

February 12, 2021 | 22m 42s
HEALTHCARE PROVIDER STORY

"Every single day, I learn something new from my seniors"

This storyteller talks about her experience being a caregiver in the pandemic. She explains the process of getting the COVID vaccine and how it impacted her daily activities. She also discusses how she stays happy during these times.

February 16, 2021 | 19m 00s
PATIENT STORY

"I am hoping that in another week or two, I can go out and see what it's like to go to a supermarket again"

In this story, a participant talks about her experience getting the COVID vaccine, her recent diagnosis of Parkinson's, and frustrations with insurance companies and changes to the healthcare system. She also explains how the pandemic has made it more dif

February 17, 2021 | 11m 33s
PATIENT STORY

"If I get a hangnail, I think it's cancer coming back"

A storyteller talks about her stage 2 breast cancer diagnosis, healthcare team, and recovery to be cancer-free today. She also talks about current health concerns of weight management and cholesterol. She ends her story by talking about the impacts of COV

February 22, 2021 | 26m 24s
PATIENT STORY

"I live my life day by day now...I don't know what's going to happen"

A storyteller explains alarming symptoms that have not been able to be resolved by her healthcare team. She explained negative experiences while trying to find someone who will listen to her concerns. After having multiple surgeries, she still finds herse

February 24, 2021 | 21m 17s
PATIENT STORY

"It's a Christmas we will always remember."

In this story, a woman explains that what the local ER thought to be congestive heart failure was COVID-19. She talked about her symptoms, the visit to the hospital for 18 days in the ICU, and the recovery process. She briefly touched on what she is doing

February 26, 2021 | 22m 08s
PATIENT STORY

"It immediately starts to effect your mental health because you just want to know what you're dealing with."

A participant talks about his experience with COVID-19, getting tested, his worries with pre-existing health conditions, and his recovery. He also talks about how he maintains his mental health and physical health after his diagnosis.

March 02, 2021 | 25m 15s
PATIENT STORY

"As my mother put it, I've been sick since the day I was born."

In this story, a participant talks about her health conditions being born premature and her second diagnosis of colon cancer. She talks about her cancer experiences, how COVID-19 has impacted it, and what she does now to remain healthy and hopeful.

March 03, 2021 | 21m 56s
CAREGIVER STORY

"If something happens in their life, they have no window of opportunity to get the second vaccination...they have to start all over again."

In this story, a caretaker tells us about her experience caring for her husband, father, and mother throughout the years. She closes the story by explaining the frustrations getting accessibility to the vaccine in her hometown.

March 03, 2021 | 23m 06s
PATIENT STORY

"I'm intelligent enough to understand the data and the science, and that's what I go with."

A storyteller talks about her experience through the pandemic and her life after receiving the vaccine. She talks about her daily activities and frustrations getting the vaccine in her community.

March 03, 2021 | 23m 24s
PATIENT STORY

"You don't need to wait until you reach a breaking point to ask for help."

After experiencing the painful loss of her mother, a storyteller talks about her journey getting help for depression and anxiety throughout the years. She explains what the process has been like to get a therapist that she feels a positive connection.

March 05, 2021 | 27m 32s
PATIENT STORY

"I wish we had telehealth back then...I actually love telehealth."

In this story, a participant talks about her experiences using telehealth, recent diagnoses from doctors and their treatment, and what she has done to remain healthy during the pandemic. She highlights the importance of exercise in her daily routine.

March 05, 2021 | 24m 14s
PATIENT STORY

"I think it's just to keep myself and other people safe."

After receiving her first dose of the Pfizer vaccine, this participant talks about her experience, side effects, and reasoning behind getting vaccinated against COVID-19.

April 15, 2021 | 08m 53s
RESEARCH PARTICIPANT STORY

You can work in your familiar surroundings, do certain activities online, and maintain a huge amount of progress in your balance and in your strength.

A research participant shares his experience in a study that he felt was very beneficial to improving his strength and balance. He also shares his experience with the program as it transitioned from in person to online during the COVID-19 pandemic.

April 19, 2021 | 22m 00s
RESEARCH PARTICIPANT STORY

The exercise thing is good in your twenties, thirties, and forties. But when you get to our age, having someone to talk to or interact with – you feel more inclined to continue it.

A research participant tells his story as part of a study involving an exercise program that transitioned from being in person to being online during the COVID-19 pandemic. He describes his experience and some of the benefits of the program.

April 22, 2021 | 17m 00s
RESEARCH PARTICIPANT STORY

It’s been a very positive experience all the way around, both from the, I hope, my improved strength and agility and the social interaction that I think all of us pleasantly experienced there.

It’s been a very positive experience all the way around, both from the, I hope, my improved strength and agility and the social interaction that I think all of us pleasantly experienced there.

April 26, 2021 | 13m 00s
PATIENT STORY

I just thought it was the right thing to do...

This storyteller shares her thoughts on lifestyle changes when it comes to aging, supporting friends at different stages of their health, and making preventative health decisions .

April 28, 2021 | 20m 16s
PATIENT STORY

"There's some people I haven't seen for a year...I've had to do things differently."

This storyteller talks about what it was like getting the vaccine to protect himself against COVID-19. He briefly talks about his preexisting condition of epilepsy, how life has changed since the pandemic, and what he does now to stay safe.

April 30, 2021 | 06m 50s
RESEARCH PARTICIPANT STORY

I can feel that I’m doing better than I had been, and that I’ve made progress with these exercises

This storyteller shares his experience as a research participant in a study that involves an exercise intervention. He also shares other events going on in his life during his time as a study participant.

April 30, 2021 | 10m 00s
PATIENT STORY

She would say, "Well, you don't look sick..you don't look like anything is wrong with you."

Alarming symptoms of weakness in one leg, fatigue, and sudden weight loss eventually led to this storyteller's diagnosis of reflex sympathetic dystrophy. She talks about life after the diagnosis, including the passing of her husband and moving away.

May 03, 2021 | 38m 21s
PATIENT STORY

I was kept inside most of the time. I didn't go out and socialize like I normally do.

This storyteller describes their experience receiving the COVID-19 vaccination

June 01, 2021 | 00m 00s
PATIENT STORY

Not only was it a change of my body, but my mindset as well.

Almost five years out from bariatric surgery, this storyteller reflects their emotional reliance on food, how this decision should be a tool through weight loss, and the emotional impact of the COVID-19 Pandemic on weight gain.

June 07, 2021 | 36m 45s
PATIENT STORY

One of the problems I feared was that we wanted to get the vaccine, but it was gonna be a long time before we actually got it.

This storyteller describes the process of trying to get the vaccine for himself and his loved ones

June 18, 2021 | 22m 49s
PATIENT STORY

In general, it was a pretty easy process. I would say that I mean the hardest process of all of it was to just get the appointment in the first place

This storyteller shares her experiences with the pandemic and getting the COVID-19 vaccine

June 18, 2021 | 07m 27s
PATIENT STORY

...it really makes you appreciate that feeling of freedom. It is a wonderful feeling.

This story teller shares their experience with the vaccine, and how the challenges toward activity when things are on lockdown.

June 30, 2021 | 14m 48s
PATIENT STORY

...was a time for me to slow down and realize the things I really did want.

A month after entering a statewide shutdown, during the covid-19 Pandemic, this storyteller is diagnosed with a autoimmune disorder;being at risk and a physical therapist can make you conscious the changes you have to make for your health and safety.

July 06, 2021 | 23m 36s
PATIENT STORY

...hear their concerns and make them feel heard.

There was no question this storyteller would be receiving the vaccine, fortuanate as they were to receive it early,this storyteller shares the anxiety in going to too public places and changing plans.

July 08, 2021 | 19m 19s
PATIENT STORY





July 14, 2021 | 23m 24s
PATIENT STORY

Well after I got the shot I had no side effects, except this...

This story teller shares their experience with the vaccine and the symptoms they experienced afterwards, and how the pandemic impacted their life.

July 14, 2021 | 13m 25s
PATIENT STORY

What I do during the day depends a lot on the arthritis.

This story teller shares unusual symptoms they had after receiving their second shot of the COVID-19 Vaccine and how only time will tell what long-term effects this could have on someone with Rheumatoid arthritis.

July 16, 2021 | 13m 46s
PATIENT STORY

...it's difficult...it turned my life upside down.

This storyteller shares the experience with a rare genetic disorder;Having fallen into a canontonic coma after a seizure, listen as the storyteller shares their journey through their generational health history and getting involved in research.

August 02, 2021 | 00m 00s
PATIENT STORY

...when mistakes are made, it should be an opportunity to correct them...

A genetic disorder passed down through now three generations, leaves this storyteller sharing their experience with CADASIL and the challenges with getting answers when research has not reached far enough.

August 06, 2021 | 37m 24s
PATIENT STORY

The hardest thing was taking her to the hospital and leaving her there.

This storyteller shares their expeirnece with COVID-19 infection through themselves, and the loss of their mother, and the impact the pandemic has had on quality of care in the health institutions.

August 13, 2021 | 27m 02s
PATIENT STORY

There were quite a few times where I would call home and say, "I can't do this."

Having had childhood brain tumors, with an upcoming brain surgery, this storyteller shares on navigating college and the health system during a pandemic being immunocompromised.

August 17, 2021 | 36m 48s
PATIENT STORY

Sometimes when you go to the hospital or doctor, you're frightened.

This storyteller shares their experience obtaining the vaccine injection and navigating the health system that has not always provided the best care and attention to patient needs.

August 17, 2021 | 27m 26s
PATIENT STORY

Don't demand too much of yourself...

This storyteller shares the anxiety experienced as reaching old age has made aware their health, this coming alongside the COVID-19 pandemic.

August 18, 2021 | 31m 56s
PATIENT STORY

You're not even allowed into the doctor's office...

This storyteller shares their experience after contracting COVID, health concerns that occured, and the impact the pandemic has had on their life.

September 03, 2021 | 17m 32s
CAREGIVER STORY

You're constantly asking the person with the illness, to do more stuff.

This storyteller shares being a support for her child with a chronic condition, and how being a nurse practitioner has made support easier at times.

September 16, 2021 | 00m 00s

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