Every day another friend, family member, or media friend is sharing their covid positive test results. It’s nerve-wracking! Now imagine being autoimmune or immunocompromised seeing it all! Definitely takes living during a pandemic totally takes it to another level.

As the word “Endemic” is appearing more and more thanks to California and Gov. Newsom’s new “SMARTER” plan it’s time to tackle a post that I hoped to skip.

It already felt like we were all living in a totally different pandemic. Those with money have access to medical, to travel, isolate, and all the covid tests they could want. Masks? What masks? Laws? Restrictions? None of that mattered. It was us, us scraping by that knew what it would mean if we got sick. A battle for a spot a the hospital. The hope that we can get treatment. The hope that we could even afford that medical bill if we did survive it. If we didn’t, could our family afford it or the funeral costs?

Now let’s factor in how much more for a person in my situation or a worse-off autoimmune/immunocompromised medical battle. It all just seems so heavy.

Those with severe medical conditions still have treatments postponed and “electing” or really being forced into “do it yourself” things such as home IV treatments. I just couldn’t imagine.

Personally, I’m already at the doctors’ offices too much. Too many side effects, conditions, and my immune system is easily taken out by the tiniest of colds! Do I want any more issues to overwhelm my system that barely hangs on by a thread? Heck no! Needless to say, I’m scared &^*%-less now that what little protections that were out there are being taken away.

I still remember the feeling when things were slightly opening back up and my partner returned to work. It was and still is a nightmare. We have to be so careful, but with no government assistance to keep him home, bills must be paid.

Things just aren’t always as easy, fine, and dandy. Not everyone sees what happens behind the scenes. At one point his work was even closed because a number of employees had tested positive. We were fortunate that he had been so cautious and we are all vaxed and boosted that none of us caught it, but it definitely feels like Matrix-style dodging bullets.

We are among those figuring out what will be our “normal.” And the situation sadly isn’t as black and white as us and people think. It’s not, well if you “don’t feel safe, stay home.” That’s not reality. How do we afford bills, additional costs of necessities, and food delivery?

How does one “just stay at home”???

Besides the day-to-day life things, we have had to get thicker skin. Ignoring those around us being risky and still expecting us to meet up with them. Friends/family getting mad at us that we won’t hang out with them as we would pre-pandemic. Having to strengthen boundaries is a part of our new normal.

In the meantime, we all just try our best. We chose safer days and safer locations. Every event is a “is it worth it?” Most of the time we only opt for ones we know are 100% vaxed and outdoors.

We’re doing our best, but nothing is perfect or without risk. Everything still is a risk.

I have a teen, a teen that is at least old enough and happy enough to get the vaccine, but I couldn’t imagine if they were still youngster (those below the age requirement). I see left and right those parents struggle through quarantine, sickness, and sometimes even hospital trips. It’s awful.

Even with the vaccine, my teen going to school is still a risk. We get emailed letters home daily of some staff or student that has tested positive and now with all the push to drop mask mandates in school as well?! Like, what school is your kid at that you aren’t also receiving these messages?

I get you may be asking, “…Well, why don’t you homeschool then?” Not everyone has 100% say for their children. Some like myself, unfortunately, have legal issues of “co-parenting.” Which don’t get me started, but the Family Court System was definitely not set up for a pandemic crisis situation like this. And what immunocompromised person wants to be in a courthouse situation right now? It’s really a mess.

My heart aches for families in far worse situations and I read their stories often.

Don’t be fooled by what you’re seeing in your happy rose-colored social media feed. I am far from alone in these complex worries and feeling without options. A lot of us are scared. We’re swapping stories behind the scenes and some amongst us are brave enough to use our platform to draw attention to this.

It’s hard out here. None of this is easy, but I’m begging you to keep in mind your autoimmune and immunocompromised loved ones.

I really recommend taking the time and reading- “THE MILLIONS OF PEOPLE STUCK IN PANDEMIC LIMBO – What does society owe immunocompromised people?” by Ed Yong on the Atlantic. There is a lot in there.