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As concerns about the COVID-19 vaccine have shifted from issues like difficulty scheduling appointments and which groups are being prioritized to encouraging more people to get vaccinated, it is leading to new challenges for the immunocompromised patient community around combatting vaccine hesitancy.
People who take immunosuppressant medications or who have autoimmune or inflammatory conditions have had concerns about the COVID-19 vaccine since it started being administered late last year. Public health experts, medical organizations, and specialists (such as rheumatologists and gastroenterologists) who treat these conditions have stated the vaccine is safe and recommend that patients should get vaccinated (unless they have a specific contraindication, like an allergy to a vaccine ingredient).
But concerns remain about whether the vaccine may be somewhat less effective in these patient groups compared to the general population, which makes it all the more important for the loved ones of immunocompromised people to get vaccinated too.
However, a recent poll from market research company Morning Consult shows that America is struggling to move the needle — literally and figuratively — to make people more open to getting the COVID-19 vaccine. The highest rates of vaccine unwillingness — which was defined as the percent of people polled in that state who said they are unwilling or hesitant to get the vaccine — are in Mississippi (30 percent), Idaho (29 percent), and South Dakota (28 percent). The lowest rates of vaccine unwillingness are in Hawaii (11 percent), Massachusetts (11 percent), and Connecticut (13 percent).
It’s gotten to a point where the U.S. Centers for Disease Control and Prevention (CDC) has outlined tips for talking to friends and family about the COVID-19 vaccine, even when they have vastly different opinions about it than you. This can feel like navigating choppy waters for anyone, but it’s amplified when you’re immunocompromised and your loved ones’ decisions can have a bigger impact on your health.
For immunocompromised individuals who may not garner a full immune response to the vaccine themselves, being around those who are vaccinated is especially important for protection.
The American College of Rheumatology clinical guidance states that, “household members and other frequent, close contacts of AIIRD (autoimmune and inflammatory rheumatic disease) patients should undergo COVID-19 vaccination when available to them to facilitate a ‘cocooning effect’ that may help protect the AIIRD patient.”
But what can you do when you live in a region where vaccine hesitancy is high or if your loved ones don’t want to get vaccinated — or even criticize you for doing so? Consider these tips from medical organizations and clinical psychologists to navigate conversations without damaging your relationships or putting your health in jeopardy.
Listen to Your Loved One with Empathy
It may be difficult to listen if you hear loved ones repeating claims about the vaccine that you know to be false. But if you immediately shut down their concerns, they may not listen to you in return.
The CDC recommends you acknowledge your loved one’s emotions and say something as simple as: “It sounds like you are stressed at work and home, and concerns about the vaccine are another source of stress. That’s really tough.”
Of course, your loved ones might also have understandable concerns about vaccines in general based on fears about racial bias or unethical science. “Some people don’t trust research, and for many populations, there are good reasons not to trust research — it’s been done unethically in the past,” says Laurie Ferguson, PhD, a clinical psychologist and vice president of research and education for the Global Healthy Living Foundation. “Black populations have been used and abused, and you can understand the hesitancy that happens in terms of that.”
Read more about how the medical community needs to build COVID-19 vaccine trust with people of color.
Ask Open-Ended Questions About Their Concerns
When your aunt tells you about a social media post that made an outlandishly false claim about the vaccine — like that it contains a microchip or causes infertility — it may be tempting to snap back with, “That’s ridiculous!” or “How could you even believe that?” But that approach will quickly shut down the line of communication between you and her.
Instead, try asking questions like, “how did that post make you feel?” and “what did you do next?” to get to the bottom of where the information came from and what steps your loved one has taken to look for answers.
Next, ask for permission to share reputable information that addresses their concern. Your loved one may be more willing to listen if you ask first and they agree to look at the information you provide. Otherwise, they may feel like you’re pushing it on them.
Here are a few reputable sources of information to pass along:
- Frequently Asked Questions About COVID-19 Vaccination (CDC)
- COVID-19 Vaccines: Get the Facts (Mayo Clinic)
- COVID-19 Vaccines: Myth Versus Fact (Johns Hopkins Medicine)
Calmly but Firmly Explain Your Situation as an Immunocompromised Patient
You’re likely used to explaining your chronic illness and how it impacts your life so you can go into these conversations knowing that you’ve done this clearly, firmly, and successfully before.
“People with chronic illnesses have these kinds of conversations better than anyone else in the world,” says Kim Gorgens, PhD, Clinical Professor and Director of Continuing Education at the Graduate School of Professional Psychology at the University of Denver. “The rest of the world would be better off if everyone had that kind of clear, assertive boundary-setting behavior. But it doesn’t mean that it’s easy or it isn’t taxing on relationships.”
As you chat with your loved ones, use “I statements,” which help you effectively voice your concerns, rather than “you statements,” which may come off as attacking or blaming your loved one.
For instance, try, “as an immunocompromised patient, I’m worried I may not be protected if those around me aren’t vaccinated,” rather than, “You’re putting me at risk because you don’t want to get the vaccine.”
Calmly explain your point of view and why it’s important for you to get vaccinated — and why you hope your loved one will consider it, too, for your own protection (as well as theirs).
The CDC even recommends helping your loved one find their “why” for getting vaccinated: maybe it’s to protect you and other loved ones, maybe it’s to get back to activities or attending events, or maybe it’s to simply feel less anxious about getting COVID-19.
Keep It Brief If a Loved One Criticizes You for Getting Vaccinated
If someone is criticizing your decision to get the COVID-19 vaccine, know that you don’t owe them a long-winded explanation (or any at all). If you do want to provide an explanation, keep it brief and remember that you’ve made a decision about what’s best for your personal health.
“I think it’s finding that inner rightness within yourself,” says Dr. Ferguson. “You don’t have to be defensive about it, you just have to be clear. Say, ‘I do a lot of things for my health because I’m immunocompromised, and I’m looking out for my health, period.’”
Set Boundaries with Those Who Choose to Remain Unvaccinated
Of course, every medical decision is a personal one. Some people have conditions that prevent them from getting the vaccine, like having a known allergy to a component of the vaccine. You can’t force those around you to get vaccinated, but you may need to establish boundaries with those who choose to stay unvaccinated when it can impact your health and safety.
“If this is a relationship where you might rely on this person for some degree of protection — like someone who provides childcare for your kid or who is in and out of your home and exposes you to some risk — then there needs to be a really important conversation about the steps that person is willing to take to ensure your safety,” says Dr. Gorgens. “If not vaccination, then what?”
As the world reopens, some experts have recommended that immunocompromised patients continue to follow standard mitigation efforts. This is because more research is needed to determine how these individuals bolster an immune response to the vaccine.
The actions of your friends and family can help you make choices about how you’re going to spend your time. If those in your personal circle don’t want to get vaccinated — or want to do things you don’t feel comfortable with yet, like going to indoor gatherings without masks — you may choose not to see them unless it’s in a situation where you feel comfortable.
For instance, you may feel safe occasionally visiting with an unvaccinated friend in an outdoor setting with masks on, but you wouldn’t be ready for weekly Friday night dinners like you used to have before the pandemic started.
Your doctor can also help guide your decisions by discussing your risk level based on your underlying health issues and medications. There’s no way to know how you responded to the vaccine (antibody testing is not recommended and provides limited information anyway), but your doctor can help guide you based on general information about COVID-19 risk factors. For example, certain medications, such as rituximab or high-dose steroids, have been shown in initial studies to lead to weaker immune responses to the vaccine. And other risk factors like older age, obesity, and comorbid health conditions (such as heart and lung disease) can further raise the risk of COVID-19 complications.
As you set boundaries about how and when you can see unvaccinated loved ones, Dr. Gorgens recommends keeping these three things in mind:
- Use first-person “I statements” like “I personally don’t feel comfortable with this.”
- Avoid getting swept up in explaining yourself, because it’s not necessary.
- Remember that you’re good at setting these boundaries (you’ve likely done it before).
“They may be disappointed that you can’t attend a wedding or a children’s choir performance, and they might have the privilege to not understand it all because they have no experience with chronic illness,” says Dr. Gorgens. “But you have a responsibility to set and protect those personal boundaries.”
Take Care of Your Mental Health
It can be hurtful if someone close to you doesn’t want to get vaccinated, even after you’ve explained to them that it’ll help keep you safe. But know that this is not a reflection of your worth or how deserving of love you are.
“For the people I work with, the hardest part is their own inner feeling that somebody doesn’t love them enough to be willing to go the second mile,” says Dr. Ferguson. “That’s a painful feeling. I encourage my patients to not dwell on that — people make decisions about their life for whatever reasons, and you also get to make decisions about your life as an immunocompromised patient.”
It sounds straightforward enough, but this can be a draining process. As you go through it, Dr. Ferguson recommends telling yourself statements such as:
- “I’m not going to keep trying to convince somebody that I’m worth it, because I know I’m worth it.”
- “I have a lot of evidence in my life of people who have been willing to make choices or sacrifices to help keep me safe. Those are the people I need to be with.”
Surround Yourself with a Supportive Circle
As you’ve probably discovered before, having an autoimmune condition or being otherwise immunocompromised shows you who you can trust to stand by your side. Keep these people close to you and trust them to have your back when you need support.
“Get an ally or two among your loved ones, friends, family members — somebody you know will stand with you and wear a mask with you,” says Dr. Ferguson. “Getting some allies is one of the things that can soften these hard and unfair decisions. Think about who would understand and who would stand with you.”
Also keep in mind that while it may seem like the world is rushing to return to pre-COVID normalcy, there are plenty of people just like you who are weary and continuing to take precautions.
In fact, a March 2021 survey conducted by RMG Research and sponsored by HealthInsurance.com that polled 1,000 adults nationwide found that 62 percent of those surveyed have apprehensions about life “returning to normal” — even once vaccinated. Meanwhile, 41 percent say they still wouldn’t feel comfortable indoors without a mask, even if everyone is vaccinated.
“We talk about this as though everyone is raring to go and get back out there and drop their mask,” says Dr. Gorgens. “But the other half of the people you know are also really wary about that, so finding your people is really key.”
You can also connect with other immunocompromised patients going through similar experiences through the Global Health Living Foundation’s free COVID-19 Patient Support Program. Connecting with those going through the same experiences can help you navigate another challenging chapter of the COVID-19 pandemic as an immunocompromised patient.
“You have to do a lot of thinking over and over again about your own risk tolerance and what’s appropriate for you, and take stances that can be difficult,” says Dr. Ferguson. “Get back-up and find out who can help you think through these things, so you don’t feel isolated yet again during this pandemic.”
Get Free Coronavirus Support for Chronic Illness Patients
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COVID-19 Vaccine Clinical Guidance Summary for Patients with Rheumatic and Musculoskeletal Diseases. American College of Rheumatology. April 28, 2021. https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf.
How to talk about COVID-19 vaccines with friends and family. COVID-19. U.S. Centers for Disease Control and Prevention. April 27, 2021. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/talk-about-vaccines.html.
Interview with Kim Gorgens, PhD, clinical professor and director of continuing education at the Graduate School of Professional Psychology at the University of Denver
Interview with Laurie Ferguson, PhD, a clinical psychologist and vice president of research and education for the Global Healthy Living Foundation
Laughlin N. Progress on Eroding Vaccine Hesitancy Stalls; 1 in 2 Moms Are Skeptical About Getting Vaccinated. Morning Consult. April 22, 2021. https://morningconsult.com/covid19-vaccine-dashboard/#section-22.
March 2021 Survey. HealthInsurance.com. Accessed May 4, 2021. https://benefytt.com//wp-content/uploads/2021/03/healthinsurancedotcom-march-2021-survey-results.pdf.