I’m going on week three of a crash out in my autoimmune situation and I’m not going to lie it’s scary.
My spinal pain is flaring, my migraines are relentless and I have no timeline for a resolution. I’m not even sure what’s wrong. Did I just overwork myself?
My symptoms are getting better albeit unevenly. And it’s just not very fast. I had many steps forward in my case in the last year thanks to artificial intelligence aiding diagnostics and protocols.
So having a few steps back worried me. As if I can’t know consistently what is going on in my own body, can I ever I trust my health?
I am in a perpetual loop of questioning how hard I can push. Clearly the hard push I did for spring was too much but where is the balance? I feel good and I exercise and then I’m crashed out. I feel bad and keep calm and I’m still crashed out. Cause and effect are not clear this last month.
It is always a confusing experience for folks who don’t see me as sick. And I forget as I’m very open about managing a chronic disease. And I have looked almost indomitable most of the year. Bets from years ago are on a winning streak and it feels amazing.
So there are people new to my life who have mostly experienced a fully functional globetrotting Julie. Why would they know I manage that at a knife’s edge? I haven’t had extended down time till this summer. So now I’ve had three weeks of struggling, it’s a tentative “hey feeling better?” line of questioning. Sort of? Depends on what hour of the day you catch me. I keep thinking I’ll be better when I schedule work and then I am not.
And I hate saying “No I’m not really feeling great and I don’t know when I will.” That’s a scary answer to anyone who doesn’t live with a complex chronic disease. It sounds like I’m unreliable when in truth I don’t want to commit to something I can’t be sure I’ll accomplish.
What should I say? “Don’t worry I’m a cripple so being sick and down is sort of a semi-permanent state. It’s fine!
What about “it scares me more than it scares you. You can move on. I have to live like this.” That is some TMI boundary crossing for most, but I’d also prefer people get an honest answer. There is no guarantee of ever getting better. It’s called chronic for a reason.
I used to try to be a little gentler about this reality. Thanking folks for asking and explaining there is no “better” just yet. I say maybe one day we will figure out what’s wrong and find a cure. And I mean it. I work so hard at getting more functionality back. And sometimes I have functionality for an extended periods. That’s been amazing for me.
I’m less reticent than ever to articulate that chronic illness is quite common. Yes I have a complex case and yes it’s cause is tragic (we tried to have kids) but it’s not a get better situation like a cold. It’s a sometimes it’s better sometimes it’s worse disease profile.
After the pandemic the sheer number of semi-fucked post viral covid adjacent chronic illnesses I encounter are so numerous, I figure why sugar coat it? It’s a get better sometime situation for most of us. I just hope that sometime is soon. So vote for the right to try and the right to compute. For all of us. So that sometimes becomes now and that now becomes permanent.
One reply on “Day 2028 and Get Better Sometime”
This, what you wrote today, touched a raw place in my being. People don’t know. They don’t understand. And we can’t expect that they would. Because why would they? We don’t walk around with placards strung from our necks advertising the crap we’re struggling with, do we ? Most of us just show up and try to do the best we can with whatever hand we got dealt that morning when we woke up and figured out which way things were likely going to go. So my thought is that maybe the question “how are you today” merits more than just a robotic consideration of the response you get from asking it. Just my perspective.