It’s one of those days again where my body has succumbed to the inevitable long covid crash from doing too much. I often feel like a shadow of my former self with how much I can no longer do as I try to balance and reserve the minimal energy I do get. There are so many hard things about dealing with this that go beyond the recurring symptoms though and some days that extra stuff is worse than the symptoms I and others have been left with.

One of those difficult things is trying to get medical professionals, organizations, and people to understand the impact and make them believe you know what’s going on with your body. Those of us dealing with long Covid get tired of the blood tests that confirm it’s not to do with weight, genetics, or some other sort of label. We get tired of having to explain what it’s like, how long it’s been going on, what we’re doing to try and overcome it, how life has changed since, and whatever else broken record response we need to continually say just to have this illness recognized. Our schedules are filled with appointments and tests to try and find ways to diminish our symptoms and to document everything for those keeping us under a microscope of disbelief. We have to self advocate constantly in hopes someone will finally believe us and want to help.

And many people don’t understand and ask things like, “have you thought about switching careers,” as if another career would be the bandaid to what we’re going through. Personally, I didn’t do 8 years of school, get 2 degrees, and pull those all nighters, just so I could get sick while working and then have to start from the beginning again in something new. I only finished paying off my student loans this year! No, switching careers or to a different location isn’t going to fix what’s going on. It’s such an attack for those of us dealing with this to be told, “well, have you thought about changing up something major?” Those of us dealing with this are already suffering from the loss of finances from not being able to work whether full time or reduced to part time. We’re already eating up the bills of specialist appointments and trial medications or supplements in hopes of regaining who we were before this. We have lost so much of who we are that losing that part of us too is off the table.

We are guinea pigs in this. Although the conspiracy theorists tell us we’ve brought it on ourselves. But the reality is, this isn’t something that has been researched for decades where they can give us a concrete answer or give us a pill, and everything goes back to normal. We are the research that is happening to help others and to find solutions. We are the people in long covid support groups finding out what is and isn’t working for each other as medical professionals continue to gaslight us. We are fighting to be heard while fighting for a moment of energy to be able to change the laundry and do a load of dishes.

We have lost so much of who we are as fatigue and other symptoms hold control over us. We are told to pace and adjust to conserve energy and avoid crashes, while also being told to get back to work faster than our bodies will allow or to exercise which causes more crashes. The things that were us collect dust, unused, and meld into the shadows of who we were before long covid took hold. We fight for our own identity in all this because of how much we can no longer do that was us before. We want to be better. We want to live our lives like we once did. We want answers. And we’re exhausted from all the other things we have to navigate that go beyond the symptoms we’re trying to get under control.