For as long as she can remember, Rikki Edelman, 44, has had digestive issues. As a child her symptoms came and went. But then came adolescence. “When I was about 16 or 17 is when it got severe and constant,” she tells SELF. She was about 21 years old when she was officially diagnosed with an autoimmune disease.
Since then she has tried numerous treatments—some effective but short-lasting, some with problematic side effects, some not effective at all—to find relief. During that time her health condition made life difficult and painful, consuming her thoughts and daily behavior.
“I had to be near a bathroom constantly,” she says. “I couldn't really go anywhere, I couldn't really walk my dogs very far. I was in pain most of the time.” She says it felt like having the stomach flu, but constantly.
Her autoimmune disease impacted her ability to fully participate in her life, she says, like when she visited Yellowstone National Park with her sister in an RV at a point when her condition wasn’t well managed. “I felt like crap the entire time and I didn't really leave the RV because I needed to be by the bathroom,” she says. What she saw of the park—the moose by the side of the road, the geysers—was mostly through the windows of the vehicle.
That all changed two years ago, when Edelman started a new treatment regimen that finally blessedly worked.
“It’s the difference between night and day,” she says. Her bathroom habits are normal now, for starters. And she marvels at the difference in her energy levels. After years of pain and low energy, and feeling tethered to the nearest toilet, this new life feels like a revelation.
Here’s the thing, though. This life-changing treatment is a combination of medications that in addition to improving Edelman’s symptoms also suppresses her immune system. This causes a whole host of other problems and concerns. Put it this way: If the immune system is a car, Edelman is essentially driving around the world without a windshield.
And then there’s this: Not only does Edelman’s compromised immune system make her more susceptible to contagious illnesses, but it also means that she can’t turn to vaccines for help.
If you are fortunate enough to have a typically functioning immune system, you’re probably aware that germs are ubiquitous and unavoidable. But besides maybe keeping hand sanitizer in a bag or remembering a yearly flu shot, you probably move through the world without much alarm that you’re surrounded by germs all the time. You have the peace of mind of knowing that your immune system will help keep you healthy or at least protect you from getting too sick.
Edelman doesn’t have this peace of mind. And neither do the millions of other people living with compromised immune systems.
According to research from 2013 by the Centers for Disease Control and Prevention (CDC) and analyzed in 2016 in JAMA: The Journal of the American Medical Association, out of 34,426 adults surveyed, 951 of them were currently immunosuppressed, suggesting that some 2.7 percent of the U.S. population—or 8.5 million people at the time—could be medically deemed to be immune-compromised.
There are numerous reasons someone might have a weakened or compromised immune system. Certain health conditions such as HIV suppress the immune system. Undergoing chemotherapy does too. People who’ve had solid-organ or bone marrow transplants take medications so that their immune systems don’t attack their new organs—which, yep, weakens the immune system. And in some cases, like Edelman’s, treatment for a particular health condition may require immunosuppressive therapy as well. Drugs that can suppress the immune response are used in treatment for several types of autoimmune-related diseases such as inflammatory bowel disease, lupus, rheumatoid arthritis, and moderate to severe psoriasis. This isn’t an exhaustive list either, not to mention that new drugs are regularly being developed or approved for new diseases.
“An increasing number of diseases require immunosuppressive medicines, which decrease the immune system’s ability to function normally,” says Steven Pergam, M.D., M.P.H., associate member of the vaccine and infectious disease division at Fred Hutchinson Cancer Research Center in Seattle.
For immune-compromised people like Edelman it’s not just that they’re more susceptible to illnesses—they also can’t rely on vaccinations to keep them safe. Inactivated vaccines like the flu shot, which are designed in a laboratory not to reproduce in a patient’s body, may not cause enough of a response to make her immune to that strain—meaning they’re likely ineffective for her. And live vaccines (such as the one for measles) could actually kill her.
“Live vaccines contain attenuated viruses that can still replicate but do so very slowly,” Alexander Greninger, M.D., Ph.D., assistant director of the University of Washington Medicine Clinical Virology Laboratory, tells SELF. “They induce robust immune responses in healthy people…[and] they rely on that immune response to kill off the virus in the vaccine. If there’s no immune response, then the virus will continue to replicate in the patient.” If you have a typically functioning immune system a live vaccine won’t hurt you. But that’s not true if you’re immunocompromised.
(While Edelman was vaccinated for MMR before she began taking immune-suppressing medications, doctors aren’t sure how well those antibodies are maintained in patients who don’t have healthy immune systems, especially when it comes to newer drugs like the ones that Edelman takes.)
The end result here is that Edelman and everyone else with a compromised immune system lacks protection against highly contagious, debilitating, and potentially deadly illnesses, both common (like the flu) and relatively uncommon (like measles).
So in order to stay safe, in lieu of getting vaccinated themselves, immune-compromised people instead rely on what is often called “herd immunity.” Herd immunity refers to a situation in which “a sufficient proportion of a population is immune to an infectious disease (through vaccination and/or prior illness) to make its spread from person to person unlikely,” according to the CDC.
“Herd immunity is fundamental to protecting immunosuppressed patients who either cannot be vaccinated or are at risk for severe complications from vaccine-preventable diseases,” says Dr. Pergam.
Having a compromised immune system is scary under normal circumstances. But the World Health Organization listed vaccine hesitancy as a top ten threat to global health in 2019—meaning there’s a trend of people who aren’t getting vaccinated for a variety of reasons. This impacts herd immunity. And we’re already seeing the effects in certain communities in the U.S. For example, there have been more measles cases this year than in any year since the disease was declared eradicated in 2000.
Suddenly one of the safeguards that Edelman and the millions like her rely on to stay healthy and alive is at risk of failing. And that’s terrifying.
Now that her autoimmune symptoms are controlled, Edelman says life is great, all things considered. The weakened immune system isn’t ideal, but it’s a worthwhile trade-off. But it still obviously impacts her day-to-day life in small and big ways.
Edelman is a high school teacher, which means she’s naturally exposed to a lot of germs—she says it felt like she had a sinus infection that lasted from the entire fall semester through half the spring last year (“perks of the job,” she quips).
In California where she lives, all students who attend public or private school are required by law to be up to date on their vaccinations unless a doctor writes a letter on their behalf saying that vaccines will be harmful to their health.
Beyond adhering to the law, the school also makes announcements reminding students to stay home when they have a fever, vomiting, or diarrhea, and to cover up their coughs and practice overall good hygiene. They also make students aware that there are immune-compromised people at the school and in their community. In addition, Edelman has her students wipe down doorknobs, computer mouses, and keyboards with disinfectant wipes. If her coworkers are sick, she asks them to wear a mask. She also says one way she protects herself on a regular basis is by focusing on her personal space and trying to maintain some distance between herself and other people. “I don’t lean in to talk to them,” she says. “I avoid hugs and situations where I might be breathed on.”
She’s also diligent about her safety outside of school which she says causes a lot of anxiety. There’s a supermarket that she likes in Berkeley, and in May someone with measles shopped at the store, triggering warnings of possible exposure to other patrons. Now she’s terrified to go back.
The anxiety of thinking about being exposed to communicable diseases gets to her, she says. “When I read about diseases I freak out, so I can’t. I try not to. The stress and anxiety is too much for me,” Edelman says. “I just try to hedge my bets as best as possible. I don’t go to airports. I don’t go on public transit. I feel like I can’t really travel in the same way that someone who’s not immune-compromised can.” Instead she says she typically drives her car wherever she goes, and if she is going to take public transportation she tries to go to during off-peak hours so that she can avoid crowds as much as possible. “I don’t travel that much and when I have to, I try to not think about it. I wash my hands. I stay away from people,” she says.
The anxiety is particularly strong in medical settings. “I get more uncomfortable if I were to go the emergency room or the hospital, like when I'm in the waiting room at the doctor and there's a ton of people in there—because I know they're sick people,” she says. “In those situations sometimes I'll wear a mask. But mostly I just try to avoid those situations.”
She made a big exception earlier this summer however. That’s when she traveled to Sacramento to support SB 276, a proposed California state law that aims to cut back on the number of parents choosing not to vaccinate their children for reasons that aren’t medically necessary.
Some back story: In 2014, amid the Disneyland measles outbreak, California passed a law that did away with personal-belief exemptions, requiring parents to vaccinate their kids enrolled in public or private schools unless a licensed physician wrote a letter vouching that vaccination would be a health risk. In the first year after it passed, vaccination rates went up. But then slowly they started to creep back down. The Los Angeles Times reported that some public health advocates believe that doctors were writing exemptions when they weren’t actually medically warranted. These lower vaccination rates put herd immunity at risk, which in turn puts people like Edelman at risk.
She knew there would be protesters in Sacramento, many of whom were skeptical of vaccines or against them entirely, and she was nervous that she might be exposed to more pathogens than normal as a result. She debated wearing a mask but ultimately decided not to, thinking it might draw more attention to her and compel an unvaccinated protester to talk to her or breathe on her, potentially exposing her to dangerous diseases.
“I don't hate on anyone in particular. I'm just terrified,” she says.
Given that it took her decades to find treatment to help her feel better, it’s no surprise that she says she understands why people feel distrust toward doctors or the medical establishment. But when she went to support the vaccine bill she wasn’t there because she hates people in the anti-vaccination movement. She was there in solidarity with other people like her who are able to live their lives thanks to herd immunity from a well-vaccinated population.
“There have been times in my life when I've been really sick [and] my support groups of people with autoimmune diseases have basically saved my life from depression,” she says. “I want to speak for them too. Because there's a lot of us.”
“If I find something that works and it compromises my immune system...it shouldn't be wrong for me to do that,” she says. “It shouldn't be wrong for me to ask my community for help.”
This story is part of a larger package called Vaccines Save Lives. You can find the rest of the package here.
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