Friends, we are about a year into COVID-19 being a recognized worldwide problem. And we still have a ways to go … especially for people with suppressed immune systems. I’ve been immunosuppressed since 2010, and I’ve learned a lot about how to manage it and take care of myself. In this post, I’m explaining what it means to have a suppressed immune system and I’m sharing my experience and how to protect yourself, especially in a pandemic.
A new version of this post was published in 2023. View that here.
As always, I am not a doctor or a medical professional of any kind. I always share my sources. Additionally, this post contains affiliate links. Thank you for supporting Kate the (Almost) Great!
What Is a “Suppressed Immune System”?
A “suppressed immune system” means that the immune system, which protects you from sickness, doesn’t work well or at all. This can be because of an illness that causes immune suppression or a medication that suppresses the immune system.
One type of people with a suppressed immune system are people who have illnesses that affect the white blood cells. The US National Library of Medicine says, “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).
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), the immune system is too active and 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 immunosuppressants, but that’s not the only kind. DMARDs like sulfasalazine and arava 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).
How Do I Know if My Immune System Is Suppressed?
There are 2 categories of immunosuppression: suppressed because you have a condition that causes immunosuppression or suppressed from medication.
It is possible to not know that your immune system is suppressed, which would be if you were undiagnosed with a condition that caused a suppressed immune system. But otherwise, you would probably know, unless your doctor just didn’t tell you or you forgot they told you that a medication suppressed your immune system.
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If you have an autoimmune disease, it’s very important to know if 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.
Like 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.
If you are unsure if your immune system is suppressed, you can Google “is [medication] an immunosuppressant.” Additionally, if you look up side effects of a medication, usually “suppressed immune system” or something similar will show up if it’s an immunosuppressant.
That being said, let’s talk about my advice for living with a suppressed immune system!
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We’re in this for the long haul. Act accordingly! – We (immunosuppressed people) probably understood this earlier than most people. I knew it back in March 2020, partially because my rheumatologist told me to be prepared for 12-18 months at least of being careful and partially because I knew it once I realized how long this pandemic was going to be. But even though we’re 11 months into pandemic living, we still have a long ways to go. We will be the last people to leave the pandemic life, so we (unfortunately) might have another year of it.
Knowing this in 2020 was helpful because it helped me set up my own expectations. If you haven’t changed your expectations about the next year or so yet, you absolutely need to. If you don’t do this, you will be disappointed. Not to say that you can’t be frustrated! You absolutely can be. It’s incredibly frustrating to see other people disregarding precautions that can determine whether we die or not. But there are some things we can do to manage our own expectations.
I have made a concerted effort in the last year to practice self-care, to make sure I left the house (safely), etc. Another example is that I have been doing regular FaceTime and audio calls in the last year. That might not seem important, but I hate talking on the phone, so it’s a big thing for me.
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. These sorts of things aren’t necessarily proven – for example, there’s a lot of talk about how there are few truly asymptomatic COVID patients as most are really pre-symptomatic – but there is anecdotal evidence supporting these things.
The moral of the story is that there’s no such thing as too much protection from COVID. There are new variants of it that are coming out of different countries that, wide and large, are more contagious than the original. Protect yourself!
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 year has really shown how much or little people respect my suppressed immune system. 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.
Let me be clear: I’m not angry. I was in March and April, and then I was sad. But my literal life depends on following the COVID restrictions. So I’ve unfollowed a bunch of people on social media and I don’t think about them any more. I’ll never trust them, that’s for sure.
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 emailing or calling your government representatives. Call your local representatives to ask that they support local measures about getting the vaccine out or protecting people in your state. Call your federal representatives to ask that they support similar things. 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 get the idea.
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 actual literal 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.
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 difficult 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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5 Items Every Person on Immunosuppression Medications Needs
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!
Gloves – Gloves are a secret weapon. Like 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 reduce how many germs get to your face.
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.
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. This is a hospital-wide policy at MGH, and I’m sure it’s the policy in other hospitals, too.
Disinfectant wipes – SO IMPORTANT! You may think about disinfecting your hands, but what about your devices, bags, etc.? I 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.
What are your tips for other people with suppressed immune systems?
Like this post? Share it! Then check out:
Self-Care Tips That Chronic Illness Patients Need, What Is Self-Advocacy? An Answer + Strategies To Help, We Need To Talk about the “Disease Warrior” Model, The Impact of Chronic Illness on an Individual
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Stay safe, dear lady. I’m so weary…where I live, I feel like my husband and I are living in a parallel universe. We’re trying hard to stay safe ourselves, masked and distanced! If we all do it, things will get better more quickly.
Stay safe girl! Upping vitamin D, C and zinc can’t hurt either!
Aww stay safe! I’ve always brought hand sanitizer with me–even before 2020 haha. I love what Emily said in the comments about Vitamin D, C, and zinc! They are so beneficial. 🙂