How can I help my teen who feels like crap and wants to bed-rot all the time?
Hi All, I hope it isn't disrespectful to post here as a caregiver; there was another post recently by someone asking if that was ok and it seemed to be welcomed. My question is mainly if anyone who has previously been a teenager dealing with chronic pain and nausea could advise me about how much to push my 17 year old to make "lifestyle choices" that could potentially help her vs. respecting her right to fester in misery. [I hope that joking about our struggles a little bit won't upset anyone; our family culture has a fair amount of hyperbole and graveyard humor, it helps get us through some of the hard times.]
TW: SI, SH, eating disorder, substance use. Also it's really long! Sorry!
I'm desperate to help my kiddo feel better but progress with getting any sort of medical diagnosis or treatment is nonexistent. Her symptoms include chronic pain that moves around in skin, muscles, joints; head, back, hands, legs, stomach; chronic nausea every day for over a year now (somewhat helped by Remeron), and now menstrual bleeding 3 weeks out of every month accompanied by terrible cramps. We're pursuing an endometriosis diagnosis but nothing is showing up on any scans so far; i've researched nearly all of the chronic illnesses I've ever heard of and can't find anything that exactly matches her symptoms. We have an appointment with a rheumetologist next OCTOBER but nothing in that arena even sounds likely except maybe fibromyalgia. I feel completely hopeless and [aside from advocating for her medically and trying to be there for her emotionally and making very few demands on her and giving her a ton of freedom to do what she wants for fun and distraction] I don't know how to help her.
The main thing I'm struggling with as her caregiver right now is that she spends nearly all of her time in bed doomscrolling on her phone in the dark, except to go out and party with friends. I'm not trying to say that her symptoms aren't real; I know it's partly that there is a psychological component to how crappy one feels, and partly that she's willing to push through pain to do what she enjoys whereas there's zero motivation to push through it to do boring/difficult/obligational things.
She smokes cigarettes (gets out of bed every hour or two to go to the porch) and drinks alcohol when out with friends; I'm not happy about this but in light of past struggles with more serious substance use and behavior issues, these vices (and the expectation to keep up with online school) is the compromise we've landed on. We get along well, as long as I make no demands of her. If I try to limit phone use things turn ugly very quickly, ranging from threatening suicide [we've been on quite the mental health journey and I don't think this is an active risk at this time] to pleading that she needs the distraction from pain [hard to argue with]. I just feel like the doomscrolling and smoking and never getting out of bed to do things are probably making the pain and depression worse.
She will not prepare food for herself, due to her eating disorder (ARFID) she would literally rather starve, so I bring most of her meals in bed. Sometimes she will agree to do a chore or something "later", but always feels poorly when the time comes. She lives to socialize and feels well enough to go out 98% of the time she has the opportunity. She sometimes does a short workout routine, but won't go for walks or errands with me (or alone). She won't go outside except to smoke or socialize (which entails many hours roaming all over the city on transit, going to raves, etc. Yay! I'm glad she's having fun! But it's either that or bed, nothing else). She has no interest in taking on her own care whether it means learning about a medical condition a doctor has suggested, feeding herself, or learning how to do life things. She wants a surgery or a pill to fix her pain (so do I!) but won't research anything or consider any of the lifestyle changes we hear so much about: sunlight, yoga, reducing screen time, etc. and gets annoyed when I ask her to consider them.
She does talk to her therapist weekly, but it seems more like a sympathetic ear rather than working on any goals or anything. And though this is all super long (sorry!), I want to mention as background that we had a major mental health & behavioral upheaval in early adolescence (couple years of SI, SH, drug use, school refusal, and then a major therapeutic intervention.)... so we're doing better now overall. The last few years have focused on recovering from the upheaval (quit my job to take care of her, got her some eating disorder treatment, moved for a fresh start, tried various schools, now doing online school because nausea and pain made in person impossible.)
I know I can't make her do the "healthy" things that I (and the entire medical establishment and alternative healing community) believe might help her to feel better, at least a little bit. But should I push harder for that, knowing it might turn our harmonious relationship into a combative one? She is extremely stubborn and pushing any harder than I already do will certainly cause conflict.
Thanks to anyone who made it this far! I appreciate your time and insight.