Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

In our most engaged poll yet, the Global Healthy Living Foundation’s COVID-19 Patient Support Program delved into how those with chronic conditions perceive and describe their health challenges: as illnesses, disabilities, a mix of both, or neither.

The conversation about labeling health conditions is far from straightforward. With nearly 3,000 community members chiming in, it’s clear that people’s relationships with the words “illness” and “disability” are deeply personal and multifaceted.

The central questions we explored were: How do you see yourself — as someone with an illness, a disability, or perhaps both or neither? Additionally, how do you think others view you based on your condition?

“Labels and terminology frequently shift, highlighting the need to regularly check in with our community,” says Erik Stone, Manager, Instructional Design, at the Global Healthy Living Foundation (GHLF).

At GHLF and CreakyJoints.org, our primary goal is to connect with, understand, and support our community of those living with chronic conditions. Building on that commitment, we examined these responses to better grasp how our members feel about the labels of “illness” and “disability.”

Breaking Down the Numbers

Let’s dig deeper into the actual figures from the poll.

When posed with the question, “As a person living with a chronic condition, do you consider yourself to have an illness, a disability, both, or neither?” here’s how our community responded:

• Illness: 25.6%
• Disability: 10.9%
• Both: 44.1%
• Neither: 12.6%
• I’m not sure: 6.8%

Nearly half (44.1 percent) of people feel their condition acts like both an illness and a disability. This may mean they might feel sick sometimes, but also face regular challenges in doing everyday things. One member wrote: “Arthritis is an invisible issue that causes me to be ‘disabled’ sometimes and not feel well (‘Illness’) sometimes, so I feel both terms apply.”

These findings confirm that “there’s a wide variety in how people view their chronic condition,” says Kelly Gavigan, Director, Data Management and Analytics, GHLF. “The answer wasn’t overwhelmingly for illness or overwhelmingly for disability, and so perhaps not surprisingly, close to half of the respondents reported that it is both.”

Interestingly, when asked if they believed others perceived them as having an illness, a disability, both, or neither, the responses varied:

• Illness: 23.1%
• Disability: 9.6%
• Both: 14.9%
• Neither: 27.4%
• I’m not sure: 25.0%

“These results demonstrate a real disconnect between how patients self-identify and how others identify them,” says Stone. “By diving deeper into these perceptions, we can better understand this disconnect and how it may affect the health and well-being of patients everywhere.”

Of those who participated, 1,589 provided in-depth, free-text responses to why they selected certain terms. From these detailed responses, several key themes stood out:

The Invisible Struggle

Many from our community highlighted the invisibility of their conditions, stating that while they might appear healthy outwardly, their internal struggles are real and ongoing.

As one member eloquently put it, “I look healthy on the outside but know that I am not on the inside.” Another added, “I don’t think people can SEE that I have a disability — therefore they do not think I have anything wrong with me.”

According to Gavigan, “This poll reinforced the challenges with the invisible nature of many chronic conditions, which make the conditions unlikely to be viewed as a disability by other people.”

Illness vs. Disability: The Perception Dilemma

The distinction between “illness” and “disability” was another focal point.

To many, an “illness” might sound like a temporary setback, like catching a cold. But for those living with chronic diseases, there’s a deeper divide between seeing their condition as a fleeting illness versus a long-term disability.

One member candidly wrote, “I used to think it was just an illness, but then I realized it’s not like a cold that’ll just go away.”

Another added, “Illness feels like there’s a cure coming. My disease doesn’t have that; it’s disabling.” This statement underlines the emotional weight of recognizing a condition as more permanent.

This perspective shifted for some depending on the current state of their condition, reflecting the fluid nature of chronic disease. “At this point in my life, I am disabled from both of my arthritic diseases,” remarked one individual. Yet another mentioned, “At the moment, my condition is just like an illness; I am able to do everything.”

Chronic Condition: A Preferred Term?

There was also a significant group that found “chronic condition” a more fitting description, choosing it over the labels of illness or disability. “I don’t feel ill or disabled but I am trying to manage a chronic condition,” wrote one respondent.

Another emphasized the mental health aspect: “I try to define myself as living/functioning with sometimes chronic conditions rather than as ill or disabled. Better for my mental health.”

Addressing Accommodations and Stigma

Members also brought to light accommodations for disabilities and the societal stigmatization attached to the term “disability.”

“My employers consider rheumatoid arthritis to be a disability, which allows me to have needed and protected accommodations,” wrote one member.

Another admitted: “I know I have a disability, but I hate thinking about it that way and discussing it with others because the term ‘disability’ is so stigmatized.”

Self-Perception vs. External Perception

What’s more, many respondents highlighted the importance of viewing their chronic conditions from their personal perspective. They emphasized the distinction between how they see themselves and how they believe others perceive them.

“It’s important to know how to refer to people’s chronic conditions from their own point of view and voice,” says Gavigan.

Why This Matters

Your responses show that everyone sees chronic diseases differently. It’s important to understand these views because they affect mental health, how people feel about themselves, and the choices they make about their care and support.

As we further explore the language of chronic disease, our goal remains the same: to ensure our patient community feels validated, supported, and heard. Stay tuned for more polls as we continue to explore and address this important topic.

About the Patient Support Program Quick Poll

Members of our program have underlying health issues — such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing polls by joining the support program here.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

It’s been over three years since the World Health Organization declared COVID-19 a global pandemic. In that time, we’ve been asking our community through quick polls to our Patient Support Program about their experience living through this time including masking practices, vaccination plans, mental health, and more. As safety guidelines changed from the CDC, we would ask our community how safe they felt and how they plan to follow the recommendations.

Now, as COVID-19 mandates and restrictions end in countries throughout the world, we wanted to learn more about what precautions people who live with chronic illness are taking and what their COVID action plan and experience looks like.

In our latest poll, the Global Healthy Living Foundation’s COVID-19 Patient Support Program aimed to gain insight what our community is thinking and feeling when it comes to COVID now. We asked about experience with getting COVID, its symptoms, access to boosters, and masking practices.

As part of the poll, we had a free response section where participants could elaborate on their thoughts, and one common theme that emerged was around “common sense” or recognizing that people with chronic conditions may be more vulnerable to COVID. There was an overall sense that there is a need for greater awareness:

• “Support and a voice for the immunocompromised in terms of advocacy and representation among health care sectors and political leadership so we are not left to our devices and left to live out high-risk or isolated lives just to maintain health.”
• “I think public service messages need to say: ‘If you are coughing or sneezing or feel unwell, please stay home. If you can’t, then wear a mask, so you don’t spread your sickness around! If people did this, we could reduce lots of illness.”
• “There needs to be more education for the general population on continuing to protect those at risk including the immunocompromised.”
• “Awareness for people who still need to be careful. For example, theater companies that have one show a week where people need to wear masks if they want to come. Businesses maintaining outdoor spaces for eating. Recreation classes held outside for seniors.”

Here are other key insights from the poll.

Half of people in our poll have tested positive for COVID

Of the 2,722 respondents, 52 percent said they have had and/or tested positive for COVID-19. For those who said yes, only 38 percent said their symptoms lasted longer than four weeks.

Many mask indoors and want mask mandates in medical settings

Majority continue to mask indoors and from the free response section, we learned an overwhelming amount of people want masks in public spaces, especially in health care facilities. There were more than 1,000 responses pertaining to masking.

Participants were able to select all that apply when asked about when they wear a mask to protect themselves from COVID-19:

• 62% public transportation
• 58% indoor public space
• 53% indoor event
• 35% socializing indoors
• 28% I don’t wear masks anywhere
• 15% outdoor event
• 13% outdoor public space
• 12% socializing outdoors

In the free response section of the poll, many mentioned wanting mask mandates in health care facilities and public spaces:

• “I would like to see mask use continue in medical care settings. In my area the hospital systems have lifted their requirements that all medical staff and visitors wear masks.… the policy states that if a patient asks providers to mask they will. I don’t want to have to ask them to do it, although I will. I want them to take precautions to minimize the spread of COVID-19 and other illnesses all the time.”
• “Mask mandates [should] be kept in place in infusion centers and offices where there are high proportion of immunosuppressed individuals. We have no choice; we have to attend these appointments.”
• “Minimally would like health care providers to mask with K/N 95 when providing service if asked by patient who is immunocompromised or immunosuppressed, including elderly, or protecting someone who is.”
• “If I were to pick one measure of greatest importance, it would be masking (for workers and patients) in health care settings. Those of us at greatest risk for poor outcomes with COVID, do not have the option to avoid seeking medical care, and should not have to risk exposure to COVID to do so.”
• “Mandatory masking for staff and patients in health care settings, especially high-risk areas like ER, cancer/infusion centers, one-on-one contact of staff with patients.”
• “Masking on public transit, hospitals and medical centers, and drug stores. My personal belief is that masking should still occur at essential service industries like hair salon and barbers, drug stores, and grocery stores so that all people feel safe.”
• “I would like to see others mask indoors to protect the vulnerable in hospitals, public transit of all types, theaters, concerts, outdoor events where there is crowding, church while singing.”

Treatment access and affordability, vaccines, and tests matter

As part of the poll, we asked about access to COVID boosters and tests. We learned 97 percent have access to COVID-19 boosters where they live. In the free response section, many shared wanting more education and public information around boosters:

• “I would like to see a booster informational website for immunocompromised that would give information on boosters and when to take them and at how many intervals and as they are developed how to know when you are due. After shot number four I started to get confused with timelines and what to expect and when calling my local pharmacy it was not clear to them either.”
• “The Omicron booster is all but forgotten since it got minimal to no public encouragement to receive it. I think they should do an all hands-on deck public education and push for this important booster, even if it is months late.”
• “Boosters made widely available and highly encouraged.”

With the end of the COVID-19 public health emergencies, things like COVID rapid tests may not be as available as they once were so we wanted to learn more about how people with chronic disease are reacting to potential price changes. About half are willing to pay for a COVID test (54 percent), and about a quarter are not willing (24 percent) and a quarter are not sure (22 percent). Many elaborated in the free response section that while they are willing to pay, they believe tests should be free and easily accessible.

• “Easy access to COVID tests and testing, so people will continue to test without worrying about barriers or costs, particularly in underprivileged communities.”
• “I would pay to get a COVID test because I believe it is my duty to others, to isolate/mask up, and not attend in person appointments or gatherings when COVID positive. I would also pay for a test as part of a test-to-treat system for access to Paxlovid. I do, however, strongly believe that tests should be free so that the general public will continue to test when symptomatic or prior to visits with high-risk Keeping testing barrier free is essential to keeping any public engagement in mitigating COVID risks at this point in the pandemic.”
• “Free tests, especially in the winter months.”
• “Free and easily accessible take home (RAT) COVID tests.”

Many also stressed the importance of access to and innovation of treatments

• “Access to preventative antibody treatment.”
• “Access to antiviral medications.”
• “Better treatment for COVID.”
• “Better, more definitive and effective treatments.”

The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community.

To stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions, follow all of our COVID-19 vaccine coverage here.

About the Patient Support Program Quick Poll

Members of our program have underlying health issues – such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.  

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.  

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here. 

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

The U.S. Centers for Disease Control and Prevention (CDC) recently authorized a second COVID-19 bivalent booster shot for those age 65 and older who got their first bivalent shot at least four months ago, and to those with weakened immune systems who got one of those shots at least two months ago. 

In our latest poll, the Global Healthy Living Foundation’s COVID-19 Patient Support Program aimed to gain insight on our community’s plans on getting this second bivalent booster. 

Majority plan on getting new COVID-19 bivalent booster

When asked about plans to get the shot, only 12 percent of the 1,460 respondents answered they do not plan on getting it. Other responses included: 

• 43% yes 
• 22% going to speak to doctor 
• 22% already got it  

In the free response section of the poll, participants were able to elaborate on why they don’t have plans to get the new COVID-19 booster. 

Many have concerns about side effects or flare-ups

Many individuals have expressed concerns about post-vaccination side effects, as well as shared their experiences of underlying conditions flaring up after receiving the vaccine. These experiences have sparked worries about the possibility of experiencing similar symptoms again. 

• “COVID is less prevalent, and I am concerned with some of the side effects of the bivalent vaccine, and all vaccines in general.” 
• “Concerns re: flare-up of preexisting autoimmune condition following initial vaccine and booster.” 
• “Have to go off my autoimmune meds, which makes me sicker and has caused long-term damage to joints each time.” 
• “I had such terrible side effects from the original shots, I don’t plan on getting any more.” 
• “I have had a total of five COVID shots and don’t want to experience the side effects again.” 
• “Last booster caused a significant lupus flare.”

Many are confident in their existing protection

Another common theme among respondents was that people are confident in the protection they currently have from the previous vaccines and booster, and the acquired immunity from COVID infection. 

• “Had COVID plus had both shots and booster.” 
• “I just recovered from COVID, hope my immunity will suffice.” 
• “I am not that confident in the additional booster shots and their ability to further enhance my protection.” 

Many don’t want to get another shot

Finally, many just don’t want to get another shot right now: 

• “I do not think it is good to be vaccinating so often. I am not comfortable continuing to booster every six months. I would be less uncomfortable if the vaccine were a nasal administration rather than an injection.” 
• “I don’t want to get another shot.” 
• “I have two boosters already — four is enough, or it should be.” 
• “Honestly, pandemic fatigue… although I still mask. I am bedridden after vaccine for entire next day due to myalgia, and although I know logically if I get virus it could be much much worse I am having trouble caring. Instead, I plan to have booster every fall, with flu vaccine.” 

The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community.

To stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions, follow all of our COVID-19 vaccine coverage here.

About the Patient Support Program Quick Poll

Members of our program have underlying health issues – such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.  

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.  

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here. 

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

The COVID-19 pandemic has caused a lot of stress in our lives. The fear of getting sick, social isolation, coping with new variants, and the unpredictability of the pandemic have all contributed to high levels of stress. 

Even outside of COVID, chronic illness can be a source of stress, which can make symptoms worse. That’s why it’s important to find strategies to cope with stress and break this vicious cycle. 

The Global Healthy Living Foundation’s COVID-19 Patient Support Program recently conducted a poll to gain insight into our community’s stress levels and coping strategies. 

The findings: Most people with chronic illness are moderately to very stressed. The poll found that out of 3,442 respondents, nearly 76 percent reported being moderately to very stressed in the past seven days due to chronic illness. 

The most common method for dealing with stress is watching tv or movies

We also wanted to understand how our community copes with stress. The most popular response was watching TV or movies, with 61 percent of respondents selecting this option. Nearly half (47%) said they go for a walk or hike, listen to music, or read a book. 

Participants were able to select all that apply, and other ways to manage stress included: 

• 45% talk to family and/or friends 
• 36% exercise 
• 25% garden 
• 25% use social media 
• 22% meditate  
• 17% cook 
• 17% paint or draw
• 11% write 
• 11% practice yoga 

Respondents who selected “other” were able to provide additional details in the free response section of the poll. Other ways that people with chronic illness manage stress include: 

• Breathing exercises 
• Crocheting, knitting, or sewing 
• Doing puzzles, crossword and jigsaw 
• Eating 
• Spending time with a pet 
• Playing games 
• Praying  
• Sleeping or resting 

The bottom line: Living with chronic illness can be challenging, and finding ways to cope with stress is essential for managing your condition. However, it’s not always easy to know what strategies will work best for you. That’s why it’s important to talk to your health care provider about stress management techniques that may help. 

The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community.

To stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions, follow all of our COVID-19 vaccine coverage here.

About the Patient Support Program Quick Poll

Members of our program have underlying health issues – such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.  

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.  

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here. 

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

The COVID-19 pandemic has impacted exercise routines for many people. Some have added virtual options or neighborhood walks to their routine, while others have lost access to their regular gym or the natural exercise of their daily commute due to remote work. A recent study presented at the 2021 American College of Rheumatology (ACR) Convergence revealed that more than half of people with rheumatic and musculoskeletal conditions did not meet their exercise goals during the pandemic.

The U.S. Centers for Disease Control and Prevention recommends 150 minutes of physical activity per week for adults. We understand that exercise can be challenging for those with an unpredictable chronic illness, and that exercise is different for every body. It’s important to find what works for you.

In our latest poll, the Global Healthy Living Foundation’s COVID-19 Patient Support Program aimed to gather insight on our community’s exercise habits.

Most people with chronic illness exercise daily or weekly

Of the 3,303 respondents, when asked about how often they exercise:

• 47% said always (multiple times a week to every day)
• 21% said often (weekly)
• 14% said sometimes (2-3 times a month)
• 11% said rarely (once a month or less often)
• 6% said never

Chronic pain and fatigue are two of the main barriers when it comes to exercise routine

It’s no surprise that our poll revealed chronic pain (57%) and fatigue (48%) as common barriers to exercise. These symptoms can make it feel nearly impossible to stay active. To help get motivated to move, here are 19 things you can tell yourself to help you get started.

Participants were able to select all that apply, and other barriers included:

• Fear injury (21%)
• Don’t want to (19%)
• Not enough time (19%)
• Don’t know safe exercises for their condition (13%)
• None of the above (10%)
• Cost (8%)
• No access to gym or recreational facilities (7%)
• No access to exercise equipment (5%)
• Judgement from others (5%)
• Don’t know how to exercise (2%)

The bottom line: Incorporating movement into your routine is essential for a healthy lifestyle, but it’s not always easy. Talk to your health care provider about how you can safely add movement into your daily life.

The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community.

To stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions, follow all of our COVID-19 vaccine coverage here.

About the Patient Support Program Quick Poll

Members of our program have underlying health issues – such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.  

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.  

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here. 

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

The COVID-19 pandemic undoubtedly changed the way outpatient care is delivered. When the pandemic first hit, providers deferred elective and preventive visits to help reduce the transmission of the virus. When possible, they also converted in-person visits to telemedicine visits. Patients also cancelled or delayed appointments to avoid COVID, and many utilized telehealth for the first time.

Now, we’ve witnessed both — a return of in-person appointments along with the continuation of virtual visits. Given the changes to outpatient care over the last few years, we sought to learn more about the patient experience with care received.

In our latest poll, the Global Healthy Living Foundation’s COVID-19 Patient Support Program aimed to gain insight on whether our community has ever been unhappy with the care they received for their condition, what they’ve done to improve the situation, and what happened as a result.

Here are key learning and insights from the poll.

Less than half of patients are happy with the care they receive.

As part of the poll, we asked “If you have not been happy with the care you received for your condition, what did you do to improve the situation?” Participants were able to select all that apply with one exclusive choice of “I’m happy with the care I receive.”

Of the 1,021 respondents, only 36 percent indicated this answer, which tells us that within our chronic illness community, the majority of patients are not happy with the care they receive.

When patients are unhappy with their care, they take action.

 For those who are unhappy and selected from all that apply, it is clear that patients took action in the following ways:

• Changed providers (34%)
• Talked to their specialist about concerns (33%)
• Got information about their symptoms and/or condition online (33%)

Less common answers included:

• Got information about their symptoms and/or condition from other patients (13%)
• Completed a feedback survey (11%)
• Talked to a nurse about their concerns (10%)
• Talked to the office staff about their concerns (7%)
• Filed a complaint (6%)
• Talked to their pharmacist (6%)
• Wrote a negative review online or social media (4%)

Patients turn to friends, family, and other providers for support.

From the free response section of the poll where respondents could elaborate on their answers, it’ clear that many turn to others in their life to ask for help and talk about their concerns:

• “Consulted a family friend who is an MD for a recommendation for another provider.”
• “Complained to my family but did nothing about it and still went to that doctor.”
• “Complained to friends, stayed with the doctor, and bumped up my research.”
• “Got information from other doctors.”
• “Joined online support groups of people who shared similar concerns.”
• “Received help from my GP to change my specialist.”
• “Talked about it informally with friends.”

After speaking up, patient care and confidence improved.

For all those who took action, we then asked how their care changed afterward. Only 12 percent reported that their care did not change.

Most reported an improvement in their care:

• I felt more confident when talking about my symptoms (37%)
• My treatment plan changed (33%)
• I asked more questions during my visit (31%)
• My relationship with my specialist improved (29%)
• My experience in the office improved (8%)
• My relationship with my pharmacist improved (3%)

A minority of respondents said their relationship worsened.

• My relationship with my specialist worsened (8%)
• My experience in the office worsened (5%)
• My relationship with my pharmacist worsened (less than 1%)

In the free response section of the poll, many shared that that they found a new provider. Some even pay out-of-pocket or travel far distances to get better care.

• “I see a new rheumatologist now. I am very careful about being prepared for appointments. Our communication seems good so far and I feel like I’m getting my questions answered, which is helpful. I now drive two hours to see a rheumatologist, but it’s worth it so far.”
• “I pay out-of-pocket to see a functional care doctor.”
• “I’ve had a very different experience once I found a caring and competent specialist. Specialist care is very limited where I live, so I had to travel out of state to Mayo Clinic. So happy I did!”

The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community.

To stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions, follow all of our COVID-19 vaccine coverage here.

About the Patient Support Program Quick Poll

Members of our program have underlying health issues – such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.  

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.  

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here. 

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

The year 2022 seemed to pass in a daze, shrouded in a fog that I just couldn’t shake. Sure, the last few years have been like this for many people with the changes that have happened in society and in our personal lives due to the pandemic. But something about this felt different to me, and I wasn’t sure what.

Worsening Symptoms

All year I’d been experiencing worse symptoms than usual. While my diagnoses of ankylosing spondylitis (AS) and fibromyalgia both cause me to experience a lot of fatigue, I was going through repeated long bouts where I’d be sleeping for 10 to 12 hours at night and napping for four hours in the day — and still feeling tired for a good portion of the rest of the day.

I increased my vitamins, talked to my primary care doctor, and tried improving my sleep hygiene. But no matter what, it seemed that these prolonged episodes of extreme fatigue kept happening.

My rheumatologist didn’t know what to do about my fatigue either. Meanwhile, I was also experiencing an increase in pain: more of my joints hurt, and more often. I was even beginning to have troubles even doing things like walking to the bathroom, so my doctor increased the medications I take for AS.

I also noticed that I’d sit down to work on an essay or write a poem — both things that I’ve been doing for many years — and no words would come. It was as if the words were floating around in my brain; I was grasping for them but was unable to grab hold of any of them. I chalked this up to brain fog, which I often experience with AS and fibromyalgia as well as right before a migraine. But why, I wondered, was my brain fog so much worse? Instead of it being bad, occasionally, it seemed bad all the time.

It wasn’t until I got close to the end of the year, and I opened my reading progress tracking app, that I really realized the severity of my brain fog. In 2022, for the first time in many years, I hadn’t met my reading goal. That may not seem like a big deal to most people, but I was an English major in college, spent a number of years teaching middle school and high school English, and I’m an avid reader.

In 2022, however, I struggled most every time I picked up a book. Every time I tried to read, I’d have trouble concentrating or stare at the page without reading it. I found myself re-reading the same sentence multiple times. I used to get sucked into books – so much so that the real world seems to slow to a halt.

Receiving a Diagnosis

Luckily around the time I realized the significance of my brain fog, I had a neurology appointment coming up. As soon as I began telling my neurologist about my brain fog and my fatigue, he asked if I had had COVID. I had, in fact. I’d contracted COVID on December 23, 2021, and experienced symptoms of an active infection into mid-January. I paused as all the things I’d experienced over the last year started running through my mind.

My neurologist began rattling off questions:

• Had I had any heart issues? Yes; I’d seen my primary care doctor about it because my heart rate significantly increased when I did simple things like wash the dishes or walk to the bathroom. I’d simply been referred for testing.
• Had I experienced issues with sleeping? Yes; despite the severe fatigue I was having, I also was struggling to fall asleep at night, having to use melatonin and other aids after years of not needing them.
• Did I experience increased depression (yes) or unexplained rashes (yes).
• Had I been experiencing any sweating or overheating? Yes; just a few days prior I recalled standing outside in a tank top and sweating profusely while all my friends shivered in coats and hoodies.

While symptoms like increased heart rate had significantly improved after about four months post-COVID, things like the fatigue, brain fog, and sweating had not.

“Unfortunately,” my neurologist said, “it seems you’re having all the symptoms we associate with long-COVID. According to the World Health Organization, long-COVID is when you still have COVID-related symptoms three or more months post-active infection.

My neurologist explained to me that there is no test for it, and that the medications I’m already on for AS and fibromyalgia are the same types he’d prescribe for managing long-COVID symptoms. There’s still a lot that is unknown about long-COVID.

Dealing with the News

I got off the phone with my neurologist and texted my parents and a few friends. “How are you feeling?” one of my friends asked me, and honestly, I wasn’t feeling much. As anyone who has lived with chronic illness for a while (especially a progressive disease such as AS) knows, new symptoms and worsening symptoms are something you begin to get used to.

I no longer take for granted the way my body is behaving today, as I know that I very easily could wake up tomorrow and have it acting differently. So, if anything, I felt a bit resigned. I knew this drill. Granted, this time it was a different thing causing my uptick in symptoms, but in the end, it boiled down to the same thing: new symptoms that I was going to have to figure out how to work around.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

You may try to take every step possible to mitigate your risk of contracting COVID-19 or the flu if you’re immunocompromised and high-risk for complications, but sometimes, certain risky situations are inevitable — especially during the holiday season.  

Perhaps a loved one you celebrated with tested negative for COVID-19 before seeing you, but later developed symptoms during or shortly after your visit. Or maybe your flight home got canceled and you spent more time waiting around crowds than you anticipated. 

“We do expect some people who’ve been traveling to have acquired infection during their holiday sojourn,” says William Schaffner, MD, professor of infectious disease at Vanderbilt University Medical Center.  

However, there are four simple steps you can take to protect yourself. Importantly, don’t be hard on yourself: It’s difficult to avoid all COVID-19 or flu risks, especially as the general population continues to shed masks and largely returns to the normalcy of pre-COVID times.  

Simply by reading this article, you’re taking steps to keep yourself (and those around you) healthy, and that’s something to be proud of.   

Step 1: Evaluate Your Layers of Protection

Ideally, you already received all of your COVID-19 vaccines, booster shots, and the flu shot — plus Evusheld, a monoclonal antibody treatment meant to prevent COVID-19. But if you haven’t already, now is the time to do so.  

“At the current time, there is not really a post-exposure prophylactic available for COVID-19,” says infectious disease physician Amesh A. Adalja, MD, a Senior Scholar at Johns Hopkins Center for Health Security. “Evusheld may have some benefit if administered immediately, however, newer variants have diminished its potency.”  

It’s worth noting that Evusheld is not currently authorized to treat COVID-19 or for post-exposure prevention, so it’s best to get it before you encounter someone who’s infected. Plus, in November, the National Institutes of Health (NIH) noted that the COVID-19 subvariants BA.4.6, BA.2.75.2, BA.5.2.6, BF.7, BQ.1, and BQ.1.1 are likely to be resistant to Evusheld. The circulation of these Omicron subvariants has been increasing in the United States, per the NIH.  

Still, some protection is better than none — and Evusheld is the only agent authorized by the Food and Drug Administration for use as pre-exposure prevention of COVID-19 in people who are not expected to mount an adequate immune response to vaccination or those who have contraindications. 

This includes patients actively being treated with high-dose corticosteroids (i.e., 20 or more milligrams of prednisone or equivalent per day when administered for two or more weeks), tumor necrosis factor (TNF) blockers, and other biologic agents that are immunosuppressive or immunomodulatory, per the U.S. Centers for Disease Control and Prevention (CDC).   

Evusheld is given as two separate consecutive injections — one per monoclonal antibody, in which one is given immediately after the other. The two monoclonal antibodies, tixagevimab and cilgavimab, are meant to directly target the spike protein of SARS-CoV-2 and block the virus’ attachment to your cells.  

They bind to different sites (which don’t overlap) on the spike protein of the virus — and they can help neutralize the virus and block it from infecting the cells in your body. Learn more about Evusheld.  

Step 2: Test Yourself for COVID-19 Liberally

Stock up on at-home COVID tests if you can (every U.S. household is now eligible to order four free at-home COVID-19 tests; you can do so here).  

“I would recommend that you have a very low threshold to test yourself for COVID-19,” says Dr. Adalja.  

In other words, test yourself if it’s at all possible you were exposed — and continue to test. If you were exposed to someone with COVID-19, test at least five days after exposure. If you test negative, consider testing again in one two days, per the CDC.  

If you develop any symptoms of COVID-19, test yourself immediately or contact your doctor. Symptoms may include: 

• Fever or chills 
• Cough 
• Shortness of breath or difficulty breathing 
• Fatigue 
• Muscle or body aches 
• Headache 
• New loss of taste or smell 
• Sore throat 
• Congestion or runny nose 
• Nausea or vomiting 
• Diarrhea 

Keep in mind that you can’t tell the difference between the seasonal flu and COVID-19 based on symptoms alone, since some of the symptoms are the same, per the CDC. When in doubt, call your doctor to get tested or at least test yourself at home for COVID-19. 

“The single most important thing you can do is immediately contact your health care provider, because given that you’re immunocompromised and high-risk, they’ll want to do testing to see if you have flu or COVID,” says Dr. Schaffner. “We have medicines like Paxlovid for COVID-19 and Tamiflu and other antivirals for influenza that can help reduce the severity of your illness.”  

If you have symptoms like trouble breathing, persistent pain or pressure in the chest, new confusion, inability to wake or stay awake, or pale/gray/blue-colored skin, lips, or nail beds (this will vary depending on your skin tone), call 911 or head to a local emergency room right away. 

Step 3: Speak to Your Doctor About Paxlovid

If you test positive for COVID-19, immediately speak to your doctor about Paxlovid. There is a short window to take this antiviral pill: within five days after symptom onset.  

In fact, it’s a good idea to speak with your doctor about how you’ll get Paxlovid before you even test positive. For instance, will you need a local pharmacy to deliver it to you if you’re quarantining, and how long will that take?

“Have a plan to have early access to Paxlovid if you do test positive,” says Dr. Adalja.  

Paxlovid comes in a total of 30 pills — three taken twice daily for five days. Each three-pill dose includes nirmatrelvir (two pills) and ritonavir (one pill).  

Nirmatrelvir prevents the SARS-Cov-2 protein from replicating, while ritonavir helps to boost levels of antiviral medicines and thwarts nirmatrelvir’s metabolism in the liver, per Yale Medicine. This helps nirmatrelvir stay in your body for longer and extends the amount of time it works for, giving you extra potency in fighting the infection. (Here’s everything you need to know if you’re prescribed Paxlovid as an immunocompromised patient.)  

The same goes for antivirals like Tamiflu: Talk to your doctor about what your course of action will be if you get sick and need medication for the flu.  

Step 4: Maintain Your Overall Health

Although there’s no magic pill for avoiding COVID-19, managing underlying conditions and maintaining healthy habits that support your immune system may help you fare better if you do get infected.  

Taking your medications as instructed and staying up-to-date on your vaccines will help fortify your immune system this winter. Even if you’re immunocompromised and may not mount a full response to vaccines, experts agree that vaccines may offer protection in a variety of ways — and that some protection is better than none.  

According to Houston Methodist, simple everyday routines can also boost your immune system, including: 

• Exercising, which mobilizes immune cells and helps them to better detect and react to infection 
• Getting enough sleep, which promotes your immune system’s homeostasis 
• Minimizing stress, which can otherwise hamper your healthy habits like sleeping or eating well 
• Choosing healthy foods like vegetables, fruits, legumes, whole grains, lean proteins, and healthy fats, which support your immune system with micronutrients like vitamin B6, vitamin C, vitamin E, zinc, and magnesium 
• Staying hydrated, which improves the circulation of immune cell-filled blood and lymph  

“This is a good time to keep your fluids up,” says Dr. Schaffner. “It’s important whether you’re feeling symptoms or not, but if you’re not feeling well, it’ll help prevent the development of complicating pneumonia.” 

And although a nutritious diet is an important part of your overall health, be wary of supplements that claim to ward off COVID-19 or other infections more than a healthy diet would. “There is no convincing data that supplementation of any sort has an impact on COVID-19,” says Dr. Adalja.  

Some data has shown that vitamin D status could impact one’s susceptibility to respiratory viruses, but the results are varied and more research is needed.  

Patients with a “likely deficient” vitamin D status had nearly twice the likelihood of testing positive for COVID-19 compared to those with a “likely sufficient” vitamin D status, per a 2020 study on a single testing center published in the journal JAMA Network Open. 

However, in a 2022 study published in The BMJ, researchers found that vitamin D supplementation was not associated with a reduction in risk of all-cause acute respiratory tract infection or COVID-19.   

“There are some studies to show that taking vitamin D tablets will not prevent or ameliorate your COVID infection,” says Dr. Schaffner. “Don’t think that’s going to give you a coat of armor.”  

You should speak to your doctor before starting any new supplements to ensure they don’t interact with your current medications (and that you actually need them — supplements can be expensive, and oftentimes the research behind them is inconclusive).  

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Some people who are infected with COVID-19 go on to experience long-term effects from the virus known as long COVID, long-haul COVID, or post-COVID conditions. Post-COVID conditions can include a wide range of health problems that can last weeks, months, or longer. Researchers are working to understand more about this condition and who experiences it. There is currently no test to diagnose post-COVID conditions, and people may have a wide variety of symptoms that could come from other health problems.  

Given the ongoing research and many unanswered questions, we wanted to learn more from our chronic illness community about their experiences with long COVID. In our latest poll, the Global Healthy Living Foundation’s COVID-19 Patient Support Program aimed to gain insight into our community’s experience with long COVID — whether or not they’ve been diagnosed with long COVID, and their thoughts on the related symptoms. 

Of the 438 respondents, 89 percent are up to date on all eligible COVID-19 vaccines or have taken pre-exposure prevention medicine (e.g. Evusheld).  

Here are some other key learning and insights from the poll. 

Of the 65 percent who have been diagnosed with COVID, 44 percent have been diagnosed with long COVID

As part of the poll, we asked if participants were ever diagnosed with COVID-19 and 65 percent said yes (19 percent from their physician and 46 percent tested positive). Of that 65 percent, 44 percent reported being diagnosed with long COVID. 

Interestingly, back in April of this year we asked about our community’s experience with COVID and only 20 percent reported that they had tested positive or had symptoms of COVID.  

Chronic fatigue, brain fog, and shortness of breath were the most common long COVID symptoms

Since there is no unform diagnosis or criteria for long COVID, we felt it important to ask about common symptoms people experienced with long COVID, to gain more insight into the condition. Of the 12 answer options, participants were able to select all that apply: 

• 78% had chronic fatigue 
• 74% had brain fog 
• 60% had shortness of breath 
• 59% had joint or muscle pain 
• 55% had sleep issues 
• 54% had headaches 
• 46% had digestive issues 
• 46% had dizziness 
• 44% had heart palpitations  
• 42% had depression and/or anxiety 
• 38% had changes in smell or taste 
• 14% had changes in menstrual cycle 

For those who had responded earlier in the poll that they have not been diagnosed with COVID, we asked about what long COVID symptoms they would be most concerned about. The responses revealed that the top three symptoms of concerns are the same as the most common symptoms experienced: Brain fog (66 percent), chronic fatigue (65 precent), and shortness of breath (60 precent). 

Along with those symptoms, COVID exacerbated symptoms of underlying conditions

As part of the poll, we had a free response section where participants could share any additional thoughts on symptoms experienced from COVID and long COVID. Many reported that getting sick with COVID exacerbated their chronic disease: 

• “COVID caused a flare of my arthritis. My medications were adjusted accordingly and now I’m ok.” 
• “Conditions I suffered prior to contracting COVID have exacerbated after having COVID (i.e., fibromyalgia, hypertension, high cholesterol, eczema, seasonal allergies, etc.).” 
• “Getting COVID did not make me as sick as I feared, but as I suspected, it did trigger a flare.” 
• “I had some of these symptoms prior to COVID-19 due to Sjogren’s. I think COVID-19 has made my Sjogren’s symptoms worse.” 
• “It has exacerbated my other ailments — asthma and arthritis pain are much worse.” 

Many people with chronic illness have remaining questions on long COVID

In the free response section of the poll, respondents elaborated on the lingering questions they have about long COVID, its treatment, and how it relates to their underlying conditions: 

• “Are immune compromised and/or suppressed more or less likely to get long COVID?” 
• “I also have psoriatic arthritis, so it is hard to know if my symptoms are from that or long COVID.” 
• “Most of these symptoms could also be my autoimmune issues so I don’t know that they are COVID related or autoimmune related.” 
• “Where can I get treatment for long haulers?” 

The Global Healthy Living Foundation is committed to providing ongoing education about COVID-19 vaccines for the chronic illness and immunocompromised community. To stay informed about the latest COVID-19 vaccine news for people who are immunocompromised, take immunosuppressant medications, or have autoimmune conditions, follow all of our COVID-19 vaccine coverage here. 

About the Patient Support Program Quick Poll

Members of our program have underlying health issues – such as inflammatory arthritis and other autoimmune conditions, heart disease, lung disease, diabetes, and more — that may increase their risk for COVID-19 complications. They are interested in understanding the best ways to stay safe during the pandemic and to be part of a community of people with similar concerns, questions, and fears.  

We regularly poll members, who live in the U.S. as well as around the globe, about a variety of topics, including how the pandemic is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.  

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here. 

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

I remember when I was first diagnosed with rheumatoid arthritis, I desperately wanted to feel the way I felt before I became ill. Free of pain, fatigue, medications, and doctor’s appointments. 

Then the pandemic hit, and now, I crave feeling the way I did before this shit show started in early 2020. Life was a bit easier; I felt better physically and emotionally.  

I’ve been stuck in this COVID funk for what feels like forever. I recognize I am languishing. In these past three years, I have seen my health decline and myself age in almost rapid ways. My body feels different. My mind feels different. My soul feels different.   

Before the pandemic I was flourishing. According to my rheumatologist, I was so close to remission. But then it all changed… 

The Toll of COVID on My Health

Over the last three years, a lot has happened that hasn’t been good for my rheumatoid arthritis or overall health, including surgeries, tests, a cancer scare, a new diagnosis, periods of drawn out illness, and medication changes.  

It’s safe to say that life has thrown a lot of shit at all of us these last three years — and it has had a profound impact on my physical and emotional health and habits.  

• I am lonely and yearn companionship but also want to be left alone 
• I’ve become isolated from friends and family (It’s been over three years now since I’ve seen my dad who lives across the world.)  
• I am angry and bitter 
• I’m exhausted and burnt out 
• I lack motivation 
• I feel numb and empty inside 
• I have become more sedentary 
• I have increased my bad habits 
• I put on weight that I worked so hard to lose  
• I feel disconnected from the world, shut in and forgotten about.  

My medications and my disease make me high-risk for COVID complications, which means to keep myself safe, I’ve had to set boundaries with others. Unfortunately, this has opened my eyes to how some people view the chronically ill. 

• I’ve lost friends because they made fun of me wearing a mask or getting vaccinated.  
• I’ve lost respect for people who’ve shown their worst colors and lack of care for others during the pandemic.  
• I’ve seen medical professionals and treatments that give me a quality of life mocked by people who’ve never needed them.  
• I’ve been told that people get sick and die all the time. It’s not their problem to help keep others safe.  
• I’ve been told I am brainwashed because I asked others to wear a mask or because I believe in modern medicine. 

Finding the Good in COVID

There were also many good changes since the pandemic — things that gave me hope and joy over the last three years. Without them, I probably would have lost it.  

Advocacy

I’m incredibly grateful for advocacy to keep me going and give me something to do in the darkness. Over the last three years, I have definitely become more passionate about advocacy and health research. 

I was also educated others about autoimmune diseases and what a respiratory infection can mean for us. Doing so got me featured on radio, tv, and web throughout the course of the pandemic.  

Virtual Care

Before the pandemic I would have to haul myself into the doctor’s office weekly for some minuscule need. Now I can chat with my doctor while sitting on the beach or in my pjs from home. With telehealth, I can spend less time being a patient and more time doing things I want to or need to do.  

Virtual options in the form of volunteer meetings and conferences have also helped make life easier with RA. I can pace myself, multitask (like exercise during meetings with the camera off, of course), and rewatch sessions or meetings to soak up all the information.  

Fewer Infections

I went 2.5 years — the longest period of my life — without having a respiratory infection. Though COVID finally caught up with me when I took my son to a soccer game. The mom guilt of not doing much for my child was gnawing at me and I was given free tickets.   

Mental Health Support

I changed my antidepressant because I felt the one I was using at the beginning of the pandemic wasn’t working for me. It has helped — my anxiety has decreased and I’m sleeping better — but it’s not a total solution for the emotions I’ve been going through lately. But switching medications wasn’t the only thing I did, I also reached out to my clinical social worker to talk about some of the uncomfortable emotions I was experiencing.   

Joy in a Quieter Life

A lot of what I did before the pandemic I can’t really do anymore — either because my favorite hang outs went out of business or became too costly or posed a potential risk to me. And I’ve made peace with that, finding a new joy in a quieter life.  

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.