In[valid]

After my class Wednesday, I watched unmasked students pile into the elevator and decided to take the stairs. I generally take the stairs anyway, but my legs had been hurting me enough that morning that I’d taken the elevator up to class. I realized my mistake one flight down, but at that point I was screwed: I had just as many stairs before me as behind me. Waiting until I could ride the elevator down in contagion-free solitude only occurred to me when I was slowly limping down the rest of the stairs, knuckles white on the bannister, making sure I had both feet on each stair before moving on to the next.

Every time I think I have a handle on what it means to have a chronic condition, the rules change on me, and I’m back to square one.

When I was a kid/teen, my kneecaps would pop out of socket all the time, and eventually that led to tearing of the meniscus and arthritis. So I’ve had moderate to severe knee pain my entire adult life. I am a champion at handling chronic knee pain.

After Fiona was born, I got diagnosed with Hashimoto’s thyroiditis. I didn’t get any treatment for the symptoms (fatigue, night sweats, insomnia) because my thyroid is still functioning, but I did get validation that something is wrong with me. I am a champion at being a mom, wife, and professor while tired. I am a champion at changing clothes three times in the middle of the night.

Next I got diagnosed with celiac. When I went gluten free, symptoms of my other chronic conditions (knee pain and night sweats) were inadvertently alleviated through weight loss. I went through the stages of grief with celiac, but I’m pretty firmly in acceptance now. Every so often I lament not being able to eat something or an experience that is closed to me, but mostly I don’t even think about it. I am a champion at eating gluten free.

Now I’ve got this new thing going on, and y’all. I am not a champion at this one at all.

This is a new kind of fatigue. I thought I was a rock star at being tired and getting shit done anyway. This is epic levels of being tired. I don’t have insomnia anymore. In fact, that was one of the signs for me that Something New had occurred several years ago when I suddenly and abruptly stopped having insomnia and started deeply sleeping through the night. I genuinely do not remember what it feels like to be rested. To have energy.

When I am having a flare up, I hurt. My joints hurt. My muscles hurt. It feels like someone has beaten me up or like I’ve spent all night engaging in heavy manual labor. Even when I’m not having a flare up, I low key feel kinda bad all the time.

And I am having massive problems dealing with all this. I feel really guilty. I feel like a burden. I feel like I’m not pulling my weight. I know I am stressing Josh out. He’s worried about me. I’d be worried about him if the situation were reversed. I feel really afraid of where this is all headed and whether I’m just going to continue to deteriorate. I’m worried I’m never going to get an actual diagnosis and therefore targeted help. I am genuinely grateful to this neuro for his willingness to try things, but he’s got limited options.

I am open to advice here. I don’t really need advice of the take it easy when you can kind because I’m already doing that. More along the lines of how do I not feel guilty and like a burden, how do I process my feelings of knowing I am stressing out my family and worrying them and feeling like I’m not pulling my weight around the house or whatever. How do those of you with chronic conditions talk about these things with your significant others or navigate all these emotions in your families?