"She's (really not) Okay."

At least a few times a week friends and family ask me how my daughter is doing.  She contracted covid and developed long covid over 3 years ago and still suffers greatly.  Some days, I'll respond "not great".  Other days, I can't respond at all as I lay next to her in bed, while she sleeps from exhaustion or pain or both.  On some very rare occasions I respond, "She's doing well!" But on most days I just say "She's okay."

The honest answer is, I don't know how to answer.  I don't know how to respond in a way that even comes close to what is going on.  

How do I explain an unexplainable invisible disease?

Yes she has good days and bad days.  And yes, I am immensely grateful for the good days.  But the good days... are still pretty bad.  She slightly recovered from her first bout of long covid but never reached her pre-infection baseline and then she contracted covid again and has been "not great" ever since.

How do I explain this to someone who only sees a healthy 15yo when she is at school or at sports or at an event.  Which is not very often.  She only attends school half days and sports when she's not exhausted. How do I explain that every morning I wake up not sure of what my day will look?  Will she have a headache, did she get any sleep, will she go to school?  EVERY DAY.  How do I explain that on her best days she ONLY has her baseline headache, baseline stomach ache and just her "normal" exhaustion?  How do I tell people that it takes her 30 minutes to get out of bed, and another hour or more to get ready to leave the house?  That I have to get one set of meds in her before she gets up while she's still sleeping so she doesn't get out of bed and pass out from low blood pressure.  Then she has to take another set of meds while she has breakfast and gets other therapies we do at home.  Then if she gets to school and makes it through the day, I have to wait in anticipation to hear how the day went and how she's really feeling (because she won't share that with anyone at school)

Will she be exhausted (very likely), will she be in pain (quite possibly), will she be depressed or anxious for reasons unknown to me but she has many of them to choose from....?  I never know until I see her.  On rare occasions she will tell me something that happened at school, have a conversation with me and even laugh and make jokes.  I can never explain the elation I feel in those fleeting moments.  The pure joy in my heart.

The rest of the time I get mostly grunts and nods and the desire not to talk.  I respect that and wonder about all the things that could be going on including quite normal 15 year old teen behavior. But I don't have the luxury to assume that.  I must always be vigilant for what else could be going on.

How do I explain that even on her best days she is not living the life of a normal 15 year old girl.  Who should be spending time with her friends giggling and laughing. Who should be in school full time and able to do homework pain free when she gets home.  Who shouldn't need to take naps just to get through the day.  Who should be playing her sport that she loves without limitations or restrictions.  Who should be pursuing the things that she loves instead of worrying about spending too much energy and not being able to do life the next day.

And the hardest part that no one can possibly "get" unless they are going through this...watching the life drain out of your once happy, fun-loving, full of life kid.  Literally seeing emptiness behind their eyes, a look of despair and hopelessness. I look that you think everyone must see but maybe it's just us mothers that know?  That look sends daggers to my heart, because I CAN"T HELP HER.

I can't make her feel better, I can't make the disease go away, and I can't even tell her it will be ok because I just don't know.

I can't explain all that.  So instead I say "She's okay."  And I sigh and take a big breath and hope and pray that one day she will be.  But for now, I take every day as it comes and hope each day will be slightly better.