For Immunocompromised People, The Pandemic is Now + How You Can Be An Ally

The United States is opening back up after almost 16 months of the coronavirus pandemic. According to Google, as of today about 152 million (or 46%) of U.S. residents are fully vaccinated against COVID-19. I have seen other figures that say half the country is vaccinated, and a quarter does not intend to get the vaccine. But for nearly 10 million vaccinated American adults like me with immunocompromised or immunosuppressed conditions, early data is showing vaccine efficacy may provide low or even nonexistent protection against the deadly virus. Medical experts warn immunocompromised people should get vaccinated, but continue maintaining the same masking and social distancing protocols we have the past year. In other words, get vaccinated, but behave as if unvaccinated. For how long, no one can say yet.

For the immunocompromised population, the so-called end of the pandemic feels like a party we have not been invited to but cannot leave. As people unmask around us and celebrate their safety and return to normalcy, public policy – and apparently most everyone we know – has decided the rights of the chronically ill to also be safe and protected from the virus should be sublimated by the convenience and comfort of the healthy, able-bodied majority. Amidst soaring hopes that society will soon be totally back to normal and unreasonable expectations about what activities are safe and medically appropriate for the immunocompromised to participate in, is it any wonder immunocompromised people could use more allies right now?

September 2017, two weeks after getting a peripherally-inserted chest catheter (PICC line) for 24 hour liquid IV antibiotics. It was a last-ditch effort to save part of my foot from amputation after an antibiotic resistant infection had persisted for two years and gone to the bone (become osteomyelitis). It was caused by inadequate treatment of my autoimmune disease during service to my country in a hardship posting overseas. Through almost two months of wearing this line to my heart, I was technically a hospital inpatient, but I went in person to work more than 80% of the time. Thanks to the Australian medical system, I still have all 10 toes. Sadly, I still have to manage my autoimmune disease too, because it is incurable.

What did the CDC say?

When the Centers for Disease Control and Prevention (CDC) updated its guidance in May 2021 to say that vaccinated adults no longer had to wear masks in many public places, there was a major caveat missing from the mainstream public discourse and media reporting: that the guidance only applied to vaccinated, immunocompetent adults. Most people went down the rabbit hole of how the guidance pertained to travel, hospitals, prisons, indoor vs. outdoor, and on and on with an inane obsession about what constitutes a “large” gathering. But there was a small asterisk I zeroed in on like a laser that applied to vaccinated, immunocompromised people. If you go to the CDC page at the link above you will see it, but in case someday it changes, I am quoting and screenshotting the information I found below.


It says: “At this time, there are limited data on vaccine protection in people who are immunocompromised. People with immunocompromising conditions, including those taking immunosuppressive medications (for instance drugs, such as mycophenolate and rituximab, to suppress rejection of transplanted organs or to treat rheumatologic conditions), should discuss the need for personal protective measures with their healthcare provider after vaccination.”


Hey CDC – if you’re going to put the immunocompromised in this terrible, ambiguous, and dangerous position by broadcasting to the other 340 million people in the country that they no longer need to wear a mask, what about at least some messaging directed AT the immunocompetent about the split in the vaccinated population,
how they can help, and the impact if they don’t? What’s next? Should people who use wheelchairs start building their own ramps to make sure they can access spaces where they need to be? I’m pretty sure this is called DISCRIMINATION. What the actual what.

What does it mean to be immunocompromised?

Someone who is immunocompromised has a weakened immune system that does not respond properly to invading infections or pathogens. Meaning your body cannot fight off things like the coronavirus as well as a person with a fully functioning immune system. A person can be immunocompromised for many reasons. Some of the factors that may play into a weakened immune system are: recent surgeries, age, genetics, having a chronic illness or by taking certain medications. Immunosuppressants are one such example. Immunosuppressants play an important role in actively suppressing an overactive immune system in patients with auto-immune diseases. By dialling down the immune system, a patient’s disease and some of the associated symptoms are well managed or controlled.

Source: https://cdhf.ca/health-lifestyle/coronavirus-covid-19-and-the-immunocompromised/

OK, let’s sum up what we have here so far:

People with malfunctioning immune systems who are the most at risk for serious illness and death from the virus if they catch it, likely little to no protection from the vaccine, and now masking and social distancing is totally done with the public messaging that it no longer serves any purpose. Maybe I should have seen this coming, but somehow, this is not what I thought when I was celebrating getting my vaccine in February.

I get that society isn’t going to mask and distance forever. I certainly don’t want to, but… What the hell? Could we make it more clear somehow that some of us aren’t stuck in the past and still need some help and answers here? Everyone should be able to empathize with this because as recently as a few months ago THE WHOLE ENTIRE WORLD WAS IN THIS POSITION.

I mean holy crap, thanks for comin’ out, CDC! Public spaces and our own workspaces have now never been less safe for the immunocompromised, as whether or not someone is vaccinated is on the honor system and masking and distancing is considered to have no remaining appreciable benefit to the community.

And thanks for not bothering to deliver the message to the rest of public about the risks they pose to the *most medically vulnerable to the virus* with all this new “freedom,” while putting all the onus on the chronically ill to convince healthy people not to interfere with their legitimate right to continue protecting themselves while we wait for the end of *our* pandemic and research to answer some questions for *us.* Oh and by the way, all of this while we have no idea whether people around us are vaccinated or not, deal with a complete lack of privacy about our medical conditions, and manage the ignorance of those around us who accuse of getting stuck in old paradigms simply for following the same rules for longer as we’ve been told to do.

I guess I was good enough to be a part of the community when you needed me to cover my mouth and nose to protect you, but now that you feel safe, how nice that my safety is irrelevant. And I thought 2020 was a big, fat parade of selfishness. Little did I know.

The hypocrisy of “We’re all in this together” has been laid bare in some particularly painful ways lately. It’s one thing for people to be unaware of an issue. But being aware and responding with psychological solutions to deeply ingrained societal and organizational inequities (“Don’t be anxious!” and “Rip the bandaid off!”) when what is needed are inclusive, corrective solutions, is always going to insult the intelligence of thinking people.


Bottom line:

Immunocompromised people legitimately continue to be at risk from the virus, but it is not being discussed in mainstream public discourse or considered in public policy – even though the ability of these patients to harbor variants and be infectious for long periods is dangerous to themselves and others. There is even emerging data that a COVID-19 infection can cause long-term damage to the immune system, which those of us who already have our own immune systems attacking us truly do not need. So who is going to hold space for this population, and advocate against this non-inclusive, harmful, selfish, and discriminatory behavior?


Will you be an ally to immunocompromised people?

I actually feel infuriated that I should potentially be wearing a mask and missing out on the life everyone else gets for months (years?) through no fault of my own because of people who choose not to get a vaccine. And what would help me more than my mask would be… the masks they aren’t wearing. Their behavior is letting a virus that has already cost 600,000 Americans their lives smolder and mutate and someday, that could cost me mine. Yes; your body, your choice. But before making that choice, please inform yourself. There is a reason why you didn’t die of polio or diphtheria as a child.

Here are some ways you can be an ally and show support to the immunocompromised community right now.

Do we protect our privacy, or exhaust ourselves trying to convert you into an ally?
  • Hold space for immunocompromised people to talk about what they are experiencing. Do not tell them what their experience is. Bring your mask and a listening ear. You really don’t need anything else.
  • Do not reframe the legitimate medical concerns of immunocompromised people at this time about their risk of contracting COVID-19, which are based on facts and data, as emotional concerns such as fear, hyper vigilance, germaphobia, paranoia, an overreaction, or anxiety. Do not describe their mitigation measures, which are recommended by their doctors and medical experts around the country, as “needing to wait and see,” “not being ready to get back to normal,” or “not wanting to get back to work.” This is disparaging, inaccurate, hurtful, and discriminatory language that marginalizes and harms a vulnerable population… and also does a disservice to people with clinical anxiety disorders (which are also a legitimate medical issue that does not deserve put-downs).
  • Do not advise someone they no longer need to wear their mask, unless you are their physician and are giving them medical advice based on their individual medical history, diagnoses, and immunosuppressant medication schedule.
  • If you are vaccinated, consider continuing to wear a mask in certain situations to protect unvaccinated children and the chronically ill.
  • If you choose to no longer wear a mask, please keep a minimum six foot distance from people you see wearing masks, especially indoors. They may be immunocompromised and continuing mitigation measures for their own protection. Do not jam into elevators or public transportation with them. Do not barge maskless into their office when they invited you to a virtual meeting. For the love of all things, show some situational awareness and compassion.
  • Do not gossip about your colleagues who are wearing masks or speculate about why, if they have not shared that information. They already likely feel ostracized, isolated, uncared for, threatened, and alone.
  • Recognize the inherent right of immunocompromised people to protect themselves in a situation that is setting them up to fail, and do not do anything to interfere with that right.
  • If you work in close contact with people or clients who you know are immunocompromised, don’t ask them if you should wear your mask with them and put them in the uncomfortable position of asking you to do something to protect them. Some people find it difficult to ask for help, especially when you clearly would prefer not to wear the mask or you would have put it on to begin with. It’s like asking a heavily pregnant woman or an old person struggling to stand if they want your seat while making no gesture to actually surrender the seat. Just do the right thing without transferring your responsibility to the vulnerable person.
  • If you have a friend, neighbor, or family member who is immunocompromised or chronically ill, offer to help that person with errands or groceries so they may stay at home and avoid unnecessary exposure.
  • If you are not vaccinated and are eligible to receive a vaccine, consider that immunocompromised people must depend on others around them to become vaccinated for their own protection. You have a choice; they do not. Let me be clear: most autoimmune disease is hereditary, permanent, and incurable. We cannot think, tough, choose, buy, or fight our way out of it.
  • Be willing to have difficult conversations with others who are hesitant to get vaccinated about why it is safe and important to receive a vaccine. Point them in the direction of legitimate research and data to help them make an educated decision.
  • If you are ill, even with a minor virus, stay at home and do not bring your germs to your workplace or public spaces. Your three-day cold can last for weeks for someone with autoimmune disease and turn into pneumonia, hospitalization, etc.
  • As people unmask and regain some of their freedom after the hell of 2020, understand that the freedom immunocompromised people gained has been cruelly curtailed. For the first time in over a dozen years during the pandemic, I went virus-free for 15 consecutive months. My first virus coincided closely with the lifting of social distancing policy in my workplace in which I could not keep unmasked people away from me. As a result, last weekend I was so ill I drove from Mexico to Texas for my first-ever COVID-19 test. Thank God it was negative… and I will note I did not miss any work.
  • Understand that the return of routine illness and infection and the upcoming flu season is going to be brutal for us, especially after living in a bubble for so long, and there is a nexus to the COVID threat. The inability of chronically ill people to protect themselves against even routine colds and flu is more than just a minor inconvenience to be misunderstood and overlooked at this time; the further breaking down of already malfunctioning immune systems is a serious threat to our well-being, an incubator for variants, and a conduit to bring COVID-19 back to general population.
  • If you work in policy, recognize that immunocompromised people have a condition that is protected under the Americans With Disabilities Act of 1990 as it was amended in 2008 (see Section 4, part 2b), and discriminating against them is not only illegal and opening you to discrimination suits, but it’s also a quick ticket to bad press and an exodus of your best employees who want a fair and inclusive place to work.
  • If you are a manager considering how to safely bring people back to the office (I say this rather than “back to work,” since many essential workers and those serving their country have actually never stopped working), extend telework flexibilities to all the workforce and be aware immunocompromised people may be a source of continued infection in the population. If they are not protected, the rest of society ultimately may not escape the pandemic’s embrace for long either.
  • If you are a manager, do not summon your immunocompromised employees to meetings or duties in small indoor areas where they cannot socially distance from colleagues who will certainly not be wearing masks. Don’t threaten your employees with professional consequences for not being able to manage these situations on the advice of their physicians. This is not just a courtesy on your part, this is you not potentially risking your workers’ lives or discriminating against them. They may not feel comfortable sharing their medical situation with you. The first time you learn about their needs may be through a formal reasonable accommodation request. Don’t take this personally, and work with the employee and HR to see what you can work out for the employee to stay productive and working rather than going out on disability.
  • Be inclusive in policies and be clear that “vaccinated adults” comprises more than one group. Recognize that even a small percentage of your workforce is worth protecting; the same way that masking and distancing was 100% mandatory for everyone’s protection when everyone was at risk, understand that some people are legitimately still at risk and insist your workforce do its part to protect one another.
  • Join the free COVID-19 Support Program for Chronic Disease Patients and Their Families organized by the Global Healthy Living Foundation (GHLF). The program emails or texts updated expert medical information on the pandemic, and provides community support and resources tailored to the needs and safety of medically vulnerable people. It’s also available in Spanish.
  • Understand that the immunocompromised have also had hopes and dreams for the end of the pandemic, which we discussed with colleagues and friends. Watching them move ahead together without us – while expecting us to carry on as normal to our detriment and giving a range of puzzled, curious, sad, disappointed, frustrated, or ambivalent reactions as to why we ‘won’t’ – is heartbreaking. It feels like watching everyone leave you behind, especially in workplaces where we serve overseas and where we do not have any other support system of friends, family, or community.
  • Please consider sharing this post with three people you think would appreciate learning more about this issue, as well as reading some of the resources linked below. Every day I talk to someone about what I am going through and find incorrect assumptions, bias, questions about very basic facts that are already out there, and skepticism. I am exhausted by navigating my surroundings and I need your help so I can stay healthier.

This sign was hanging on the wall at the first COVID-19 test I ever took, last weekend after catching a cold at work

Further reading (last update 7/22/21):

https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/responding-discrimination-against-individuals

https://www.webmd.com/lung/news/20210715/pre-pandemic-normalcy-far-off-immunocompromised?fbclid=IwAR1EQGKL3lmU3rdfuY60EsyPDKB1GgHMUwsWeH0wEhYc5fb0lhJgnp6J914

https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html

https.www.wired.com/story/the-challenge-of-covid-19-vaccines-for-the-immunosuppressed/amp

https://healthblog.uofmhealth.org/wellness-prevention/if-im-immunocompromised-should-i-keep-wearing-my-mask-once-im-vaccinated

https://www.vox.com/identities/2020/3/27/21195024/immunocompromised-coronavirus-covid19-trump

https://verifythis.com/embeds/video/536-b79c19a9-ace2-48c1-8551-de4ecee20d92/iframe?jwsource=cl

https://www.seattletimes.com/seattle-news/why-im-keeping-my-mask-on-to-keep-those-who-are-immunocompromised-safer/%3famp=1

https://www.mdanderson.org/cancerwise/fully-vaccinated-against-covid-19-but-immunocompromised–what-is-safe-for-you-to-do-now.h00-159460845.html

https://www.usatoday.com/in-depth/news/health/2021/06/27/immunocompromised-must-cautious-covid-vaccines-not-protective/7663956002/?fbclid=IwAR2Y9QmjvZMB1fmfnyOp3lZHg25eWg5cBB_rXB9O5Uz7lYiEckrOfVSuU8g

https://www.beckershospitalreview.com/public-health/proceed-with-caution-2-physicians-on-what-cdc-s-new-mask-guidance-means-for-immunocompromised-patients.html

https://www.natlawreview.com/article/eeoc-updates-guidance-covid-19-vaccination-policies-including-mandates-incentives

https://www.igliving.com/BlogEngine/post/is-autoimmune-disease-a-disability.aspx

https://www.verywellhealth.com/cdc-mask-guidelines-immunocompromised-people-5185873

https://jamanetwork.com/journals/jama/fullarticle/2779850

https://www.nationalgeographic.com/science/article/the-complex-situation-for-immunocompromised-people-and-covid-19-vaccines?cmpid=int_org=ngp::int_mc=website::int_src=ngp::int_cmp=amp::int_add=amp_readtherest

https://www.advisory.com/en/daily-briefing/2021/04/20/immunocompromised

https://www.washingtonpost.com/lifestyle/2021/04/23/covid-vaccine-immunocompromised/%3foutputType=amp

https://www.washingtonpost.com/health/2021/05/18/immunocompromised-coronavirus-vaccines-response/%3foutputType=amp

https://creakyjoints.org/living-with-arthritis/coronavirus/daily-living/immunocompromised-patients-keep-wearing-masks/


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