On being Immunocompromised

Since my de novo diagnosis of Stage IV Metastatic Breast Cancer (MBC) in the Spring/Summer of 2017, my immune system has been compromised to varying degrees. From IV chemo to targeted therapy and oral chemotherapy, it’s all affected my body’s ability to handle germs. In 2022, I was diagnosed with sepsis and spent substantial time in the hospital and returned for fluids and electrolytes for weeks afterward. Recovery took a lot longer than I hoped and I don’t know if I grasped how dangerous it was, how serious it was that an infection or virus had entered my bloodstream.

My boys were one (1) and three (3) when I was initially diagnosed and they are still in elementary school as I write this post in 2023. To say that I am exposed regularly to germs is a bit of an understatement and I often call my precious kiddos “germ factories.” Their pediatrician recommended a few things to protect my littlest when my eldest was a toddler and we still follow many of those very practical suggestions to this day.

I say all of this to give all of you some context, to see the framework within which I have to view the world. It’s not just about feeling kinda bad for a bit with a cold, it could be life or death. Maybe that sounds a bit histrionic to you, but that’s the reality that I have to deal with and have since 2017. A cold or the flu or Covid isn’t so bad for people who have a functional immune system but people like me are not able to handle the same illnesses as well.

Knowing that my immune system is not functioning in the way it needs to in order to protect me, I have had to adjust the way I interact with the world, especially when I’m getting medical care. Yes, I wear masks in public and ask the people providing me care to wear masks as well if they will be close enough to touch me or in a small area like an exam room. And I often get side eyes, rolled eyes, or other looks when I have to ask for reasonable adjustments. The huffs and sighs are also pretty consistent, along with comments they might think I can’t hear. Sometimes HCWs even tag out with someone else to avoid putting a mask on when I have to ask yet again that they cooperate to keep me safe.

One administrator told me that there is so much PTSD amongst their staff as to mask wearing that she wouldn’t enforce even the basic guidelines, even when the signs are clear about wearing masks if you are sick. That was the same appointment when a staff person quite literally sneezed in my face while fastening a blood pressure cuff on my arm. Thankfully I’d asked her to wear a mask and I was also masked but who knows how may particles came through.

Being immunocompromised means that being out in the world is more dangerous for me than for others. I have to be vigilant and I have to be careful. I have to ask for accommodations and for adjustments of many people, not just medical staff. And even though I wasn’t working in a medical office during COVID, I’m pretty sure I also have some measure of ptsd as I have watched friend after friend die from MBC and some from Covid or other illnesses their bodies just couldn’t handle.

And I’ll keep asking for masks or other accommodations — I already have a terminal illness and if I have to ruffle a few feathers so as not to loose even more time with my germ factories, then I will. Every single time.