Anyone with ADHD (esp. Predominantly Inattentive) and SLE? Help with managing both.

Hi, 27F with diagnosed SLE (Nov '25, after 2-3 years of symptoms) and have been taking a break from work & school since January to properly treat this illness, get some stability. It's been varying levels of miserable, although medication and recently starting Saphnelo has helped significantly. I've been on antidepressants and Ritalin since 2021 for ADHD-PI and MDD, both of which have been harder to manage after lupus.

I was never one of those high functioning ADHD types, had to repeat subjects several times etc. My meds help, but after gradually getting sicker pre-diagnosis, they became less effective or unreliable (don't even get me started on PMS week++, meds might as well be sugar pills...).

I've done part time work before, and enjoyed ones that required active movement, being more on the go etc. Interacting with people is also something I feel an affinity to, and any of what I've mentioned feels....so far away from my life right now. I naively thought that half a year would be sufficient in stabilising my lupus enough for me to be...somewhat okay, enough for a part time job, to resume school.

My latest flare up had me in an emotional breakdown (crying, screaming, complete anguish) because the grief of what used to be a somewhat healthy body, even with my chronic executive dysfunction, comes in waves? Most days I think there's more to life and I remind myself of how much there is to be grateful for in the little things like rainy, colder days in the sweltering heat of Southeast Asia. Then when things seem to be on an upswing, a flare reminds me that, no, this is life forever. Even with the illusion of control and the...completely unexpected situation of diagnosed SLE in my twenties when I was active, travelling, and at one point felt so, so different to what I feel daily now - I'm just at a loss of how to proceed.

Can't even manage to hold onto a hyper fixation for longer than a week before getting tired both mentally and physically, especially if said fixation requires some dexterity. While being housebound and in dim environments for most of the time (exc. appointments, therapy, psych meds, close friends-related priorities) has helped with reducing inflammation, it's so soul crushing and I'm getting a lot of anhedonia, and don't have much concept of how to live even somewhat independently in the future with this illness, when my pretty severe ADHD had me struggling for years with what felt like bare minimum to others.

I feel like a blank, defective slate, and I don't know if I even have much to dream about, or feel motivated enough to power through when I'm in this mental pit. So many things I considered to be part of my identity have had to be thrown away, adapted, or put on hold for the foreseeable future because I don't have the faculties to do them yet, or ever.

Managing a chronic illness feels like a job in itself, and it's so exhausting to have it take up so much of my mental space and time, everything really, where I don't even have the energy or enough desire to pursue anything outside of it. I don't know what life looks like even five years from now, and with the unpredictable nature of SLE, it doesn't feel like anything long term is worth much thought if it ends up disappointing me further.

Perhaps what triggered this in some way was a close friend of mine announcing her pregnancy, and although I'm overjoyed for her and we celebrated, it's been tough to reconcile with the concept of motherhood now. Honestly - just knowing deep down that I am no longer fit for it in so many ways, because I don't think my body can take much more. I was always on the fence of having children before, but it was nice feeling like the option wasn't as...far away, or requiring much more sacrifice and hardship that motherhood already entails without having SLE etc. Those kids deserve better if I'm gonna be sick for most of their life and mine. Didn't help that my partner of over 3 years left after I was diagnosed, but bullet dodged. Still stings, of course.

That's what lupus has felt like, as someone still recent in diagnosis, that a lot of choices have been limited, taken away from me and I wasn't prepared for how crushing it is. No matter what happens and even with lupus getting better, it's always gonna affect me and my life trajectory, the Sun will always be there to do its thing if I dare to think remission means I can go back to life before. I miss the warmth of it on my skin, having my curtains open to let the sunlight in and having that be okay.

The contrast of being energetic, youthful, feeling like the world could potentially be your oyster in my early twenties to what it is right now still blows my mind, and I don't know how to make of life when I wasn't some high functioning, can-do individual anyway, but I could try and learn and had the health to do so.

Now what? :/

Appreciate any similar experiences, advice, nuggets of wisdom for those who are in this weird boat. Thank you for taking the time x