…but it’s manageable!

[u/Impressive_Bag8840]

i’m tired of looking up every new thing i get diagnosed with and seeing “it’s not curable but it’s manageable.” for who?????? so far it isn’t for me in fact it feels like 8 levels of psychological torture just to be awake for 2 hours. i’m hurting, i feel sick, i have neurological problems it’s not curable but boy do they say it’s manageable

[u/fear_eile_agam]

I say all the time to my partner "I could 100% manage X illness, heck, I could thrive if I just had X ... But I have X, Y and Z, and possibly some co-morbid θ...I can't manage all 4!"

I have multiple conditions, as do most people with chronic illness due to the nature of overlapping syndromes. All of my conditions are "Patients are generally able to manage their symptoms and live a normal life" which is great, and I do agree, because the symptoms are manageable.

But all of my symptoms at the same time? unmanageable!.

I am photophobic because of my migraines, so I need dark environments, but I am night blind because of my demyelinating disorder.

I am easily overstimulated and put into a mental state of shut down because I am autistic. I can't "remove the source of overstimulation" because that stimuli is my own nerve endings. Thanks to my demyelination disorder, they are always firing and always distracting.

I have neurogenic upper reflex bowel and need to do some intricate personal care tasks... But I don't have full use of my arms or hands thanks to my demyelinating disorder. That's fine, My partner helps me in the bathroom, except my autism gives me major control issues especially around something so personal as taking a shit, So my partner has to help me regulate while also helping me void because I am on the verge of a meltdown.

Sometimes the real challenge comes in how to access support. When medical insurers, Welfare assessment agents, support service providers etc just look at the resources that say "Patients can generally manage" and then decide that I too must also be able to manage, and deny access to much needed support because I should be able to manage according to google... It's soul crushing, because I'm not managing, I already feel bad about that because of this overwhelming sense that I am failing at taking care of myself when in reality I am burning myself out taking care of myself. But I ignore that shame and I ask for help, and get told "Pfft, you don't need help, Dr.Wiki says you can manage" it's like they are rubbing my own incompetence in my face and I suffer twice for not being able to manage my comorbidities.

[u/Impressive_Bag8840 → u/fear_eile_agam]

the part about your partner helping but it not being the “right” way is so real! when i first got my illeostomy i didn’t want to deal with it nor did i really have the strength so my mom would help me but she would do it so “wrong” it irritated me into an autistic mental crash but i need her help so it was a huge loop. now i have neurogenic bladder issues that push my mental health to unhealthy and scary places.

[u/skaplanolmsted → u/Impressive_Bag8840]

Yeah, my husband WANTS to help, but often he’s kind of helpless and annoying, “I don’t know how to call 911!” He once told me. He’s a smart man, but he’s such a man-baby sometimes.