We have been living in a world with COVID for over 3 years now, can you believe it? It hasn’t been an easy time, especially for us immunocompromised patients. Living with a suppressed immune system looks differently now than it did when the pandemic started, so I thought I would talk about what immunocompromised patients should know now about living in a world with COVID.

This is an updated version of a post published in 2021. You can view it here.

I am not a doctor or a medical professional. Additionally, this post contains affiliate links. Thank you for supporting Kate the (Almost) Great®!

How Is Immunocompromised Defined? 

Immunocompromised is when you have a compromised immune system. It could be suppressed, which is when you consciously do something to reduce the immune system’s efficacy, or compromised, which is when it doesn’t fight disease properly because of an illness or disease. They essentially mean the same thing, and are often used interchangeably, but can mean different things. 

One group of people with a compromised immune system is people who have illnesses that affect the white blood cells. The US National Library of Medicine says that “these conditions occur when special white blood cells called T or B lymphocytes (or both) do not function normally or your body does not produce enough antibodies” (x). There are also conditions that can lead to an immune deficiency, like HIV/AIDS, and if someone has their spleen removed they also have problems with infections (x).

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Some people like me are on medications that intentionally suppress the immune system, and these meds are used for a variety of conditions. In autoimmune diseases (such as Crohn’s, rheumatoid arthritis, and MS). In this case, the immune system doesn’t work correctly and it’s focused on trying to destroy the body. This can only be prevented by medications that shut down or severely compromise the immune system. Chemotherapy is the most well-known immunosuppressant, but that’s not the only kind. DMARDs like sulfasalazine and Aravar are also immunosuppressants, as well as corticosteroids like prednisone.

Other people on immunosuppressive medications are on them because they’ve had an organ transplant. The National Kidney Foundation says, “When you get a kidney transplant, your body knows that the new kidney is foreign (that is, not originally part of your body). Your body will attack the new kidney and try to damage or destroy it. The immunosuppressant drugs suppress your body’s ability to do this. The goal is to adjust these drugs to prevent rejection and to minimize any side effects of the drugs” (x).

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Who Are Immunocompromised Patients?

Again, there are 2 ways to be immunocompromised: compromised because you have a condition that causes immunosuppression or compromised because you take medication that suppresses the immune system. 

It’s possible to not know that your immune system is suppressed, which would happen if you have a condition that compromised your system and you were undiagnosed. The other thing is that because COVID is so new, we don’t fully understand its impact on the body, so we might find out years from now that it damages the immune system. But otherwise, you would most likely know that you have a compromised immune system. 

If you have an autoimmune disease, it’s very important to know whether or not your medications suppress your system. If you’re on a biologic, then your immune system is probably suppressed. GoodRx says, “Biologics are powerful medications that can be made of tiny components like sugars, proteins, or DNA or can be whole cells or tissues. These drugs also come from all sorts of living sources — mammals, birds, insects, plants, and even bacteria” (x). 

Not all biologics are immunosuppressants because, as that definition shows, there are a lot of medications that are biologics. But biologics for autoimmune diseases are generally immunosuppressants.

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As mentioned above, if you are on corticosteroids like prednisone, then your immune system is suppressed. Lots of people can be on corticosteroids for short increments, such as an asthma flare or even COVID, so be aware that your immune system is suppressed while you take them.

If you are unsure if your immune system is suppressed, you can Google “is [medication] an immunosuppressant.” Additionally, if you look up the side effects of a medication, usually “suppressed immune system” or something similar will show up if it’s an immunosuppressant. 

It’s better to be safe than sorry, however, so if you have an autoimmune disease, I suggest assuming you have a suppressed immune system until proven otherwise. Medications for autoimmune diseases are more likely to be immunosuppressants than other medications, as the thing they’re treating is the immune system.

That being said, let’s talk about my advice for living with a suppressed immune system!

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Protect yourself as much as possible – The thing about having a suppressed immune system is that we can get sick from someone who doesn’t have symptoms. And I’m not just talking about COVID; in the past, there have been viruses that have gone around my dad’s office that he hasn’t had but that he’s given to me. 

The moral of the story is that there’s no such thing as too much protection from infections or viruses. You can’t assume that just because someone got a mild cold doesn’t mean the same thing will be mild for you. Hell, I nearly died from a combination virus-infection that we don’t know how I caught.

And, as I have learned in the last 3+ years, we cannot rely on other people to protect us. Personally, I will never trust other humans again. “Avoid it like the plague” does not actually involve avoiding the plague, it turns out. So do everything you can to take care of yourself. Other people don’t care.

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Cut out people who don’t respect how much of a big deal this is for you (if possible) – Obviously, this is easier said than done, but I know for me the past few years have really shown how much or little people respect my continued existence. 

People who only followed COVID restrictions for a little bit or who looked for any reason to break them made it clear that they don’t care about my life or whether I live or die. 

I know that sounds harsh, and I don’t think they were thinking, “What about Kate? I know she has a suppressed immune system, which literally caused her to nearly die in 2018, but nah, I don’t care about her life.” But that’s what their actions showed: they don’t care if I live or die. If they did, they would regularly test and keep wearing masks when they know they’re going to be around me. And I know part of the problem is that many people aren’t aware that COVID is still serious and still raging, or that the data is worse now than it was several years ago. 

In the last 7 days (as of August 19, 2023), there have been 296,219 new cases worldwide (x). As of August 8, 2021, there were 202,138,110 in the previous 7 days worldwide (x). And these are just the confirmed and reported numbers; how many more are there that aren’t reported? So one could argue that the rate of infection is worse in 2023 than it was in 2021.

(Note: the WHO says, “Starting from the week of 7 August 2023, the Region of the Americas has paused its specific COVID-19 Epidemiological Update. Subsequent COVID-19 surveillance will continue through the Influenza ad Other Respiratory Viruses bulletin.”)

Let me be clear: my literal life depends on following the COVID restrictions. So there are some people in my life that I’ll never trust again when it comes to caring for me.

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Is your government not recognizing how unprotected we are? Reach out to them – Obviously, this doesn’t apply to all countries, but in the US, one of the things you can do without leaving the house is email or call your government representatives. 

Ask your federal and state representatives to support local measures about mask mandates. Write an email about how it affects you, their constituent, that your immune system is suppressed but the decision makers are ignoring our existence. 

You can also post on social media and tag them, naming your specific concerns. Continue sharing relevant information. Name the problem about not tracking cases.

You get the idea.

Even if they don’t make changes or vote for changes, you can do your best to make them feel bad. Shame is good, actually!

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Connect with other immunosuppressed people (virtually, of course) – Sometimes what you need more than anything is people who get you and what you’re going through. Even if the people in your life take your suppressed immune system seriously, they can’t necessarily understand everything you’re dealing with. That means that you might benefit from connecting with other immunosuppressed people.

Social media is a great way to connect with others. I’ve never attended in-person support groups, but I’m sure that the hosts of those have moved them online. Search for them! You might be able to find them through your doctor’s office or medical system. There are also Facebook groups! You can search for those pretty easily.

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Try virtual therapy – Sometimes you need to get a professional’s opinion or to talk to a neutral person. That’s where therapy can be helpful. And you don’t have to have a mental illness to go to therapy!

The NHS explains, “During talking therapy, a trained counsellor or therapist listens to you and helps you find your own answers to problems, without judging you” (x). Therapy can help you if you’re going through a challenging life event, or even if you just want to make sure that things stay okay.

Additionally, therapy can be exceptionally helpful if you live with a chronic illness, and if you’re reading this blog post, you probably have one. The NHS says, “People with long-term health conditions are more vulnerable to depression, and talking therapies have been proven to help” (x). This probably isn’t shocking to many with chronic health issues, and in my personal experience, my 2 depressive episodes/experiences have been due to my health issues.

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7 Items Every Immunocompromised Person Needs

Now that we’ve talked about things you can do, let’s talk about products you can use!

Hand Sanitizer – Potentially the most important item here. You touch so many things over the course of the day, including many that aren’t cleaned as regularly as others like doorknobs. Try not to touch your face unless you’ve recently sanitized your hands, and definitely don’t eat anything with your hands unless you’ve washed or sanitized them. I picked up so many random viruses over the years before I started carrying hand sanitizer on the regular. Sanitizer is your best friend!

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Gloves – Gloves are a secret weapon. As I said, you touch so much over the course of the day, so wearing gloves (but still reducing touching your face) can help you keep germs away. These can be disposable gloves or, in the winter, regular gloves. The point is to reduce how many germs get to your face.

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Reusable mask – This is pretty self-explanatory in the world of COVID. My absolute favorite masks are from Mighty Well. The adjustable nose piece helps me keep from fogging up my glasses, the ear loops don’t irritate my ears, and they’re super lightweight. They come in 7 colors and 4 sizes! Use KATEM10 for 10% off any purchases at Mighty Well.

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One-time masks – These are ideal for plenty of reasons, but especially a) if you haven’t washed one of your reusable ones in a while or b) you’re heading to a medical facility of some kind. When I go to in-person doctor’s appointments, I wear my Mighty Well mask there and there they give me a disposable mask. I can wear it over my Mighty Well mask or I can change masks. 

That being said, while any mask is better than no mask, KN95s and N95s are the best masks to use. The Mayo Clinic says, “Respirators such as nonsurgical N95s give the most protection. KN95s and medical masks provide the next highest level of protection. Cloth masks provide less protection” (x).

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Disinfectant wipes – SO IMPORTANT! You may think about disinfecting your hands, but what about your devices, bags, etc.? I used to work at coffee shops sometimes, and if I put my phone on the table, it could pick up germs from the guy with a cold who sat there before me. I love these Well-Kept screen cleansing wipes. As for other items, I use Clorox disinfecting wipes and they do a great job.

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Air quality detectors – You may have seen people post pictures of air quality detectors! Personally, I was a little skeptical of them before writing this post. I mean, how well can it really track infections? Well, it turns out that they monitor Particulate Matter, “a complex mixture of solid and/or liquid particles suspended in the air that can vary in size, shape, and composition and recent scientific work correlate this index with a considerable risk of COVID-19 infections” (x). Additionally, “Increased PM levels may cause a lot of damage to health as they may adsorb other toxic substances” (x).

While using an air quality detector won’t guarantee safety, it goes you more information to make an educated decision.

Air purifier – The EPA says, “When used properly, air cleaners and HVAC filters can help reduce airborne contaminants including viruses in a building or small space. By itself, air cleaning or filtration is not enough to protect people from COVID-19. When used along with other best practices recommended by CDC and other public health agencies, including social distancing and mask wearing, filtration can be part of a plan to reduce the potential for airborne transmission of COVID-19 indoors” (x).

That being said, they’re a great tool to add to your toolbox.

These are just some of the products that can be helpful if you’re living with a compromised immune system, and I’ve tried to stick to products that are applicable for immunosuppressed people and not just chronic illness in general. I hope you find them helpful!

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Like this post? Share it! Then check out: 

The Impact of Chronic Illness on an Individual, Describing Pain Levels to a Doctor, How Chronic Illness Affects Relationships, Chronic Illness Advice: Resources for the Newly-Diagnosed Patient