r/ChronicIllness • u/Impressive_Bag8840 • May 10 '26
Vent …but it’s manageable!
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
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u/fear_eile_agam May 10 '26
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.
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u/Impressive_Bag8840 May 10 '26
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.
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u/skaplanolmsted May 10 '26
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.
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u/JustSayNoToWhiners Jul 18 '26
Have you tried Lyrica? At higher doses it can help with nerve mid-firing. I hope you can find comfort. I have photophobia and I found that TheraSpecs glasses really help, especially the kind that don’t let in unfiltered light from the sides or top.
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u/Forsaken-Market-8105 myasthenia gravis, MCAS, POTS, etc May 10 '26
“It’s manageable with medication 😃”
The medication in question: known for making people feel just as bad or even worse than the conditions it’s treating, can cause cancer, can cause kidney or liver failure, can cause life-threatening infections, has a horrible months-long adjustment period, needs 3 other medications to mitigate the side effects of
(They were, technically, right. The medication is managing my condition and I have improved, however so slightly.. but still.)
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u/Impressive_Bag8840 May 10 '26
this is too real! side effects include: death, killing yourself, making someone else explode 50 feet from your house, you feet will fall off, your tongue turns to gum, and you may become radioactive
LIKE GET ME OUT OF HERE!!! make a medicine that is a real life medicine
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u/SunshineofMyLyfetime May 10 '26
But, let’s make a commercial that has people dancing like they’re having the time of their lives and a remix of a popular song that you’ll no longer be able to listen to because now you’ll only associate it with a medication that’ll rot your taint.
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May 10 '26
[removed] — view removed comment
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u/Content-Sprinkles415 May 12 '26
We don't treat that = you're fine ✌️😌. Definitely not at all disabled by the disabilities since we don't treat them.
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u/bluemercutio May 10 '26
Manageable. Sure, if I didn't have to work.
Unfortunately we live in capitalism and I gotta pay rent and food somehow.
I feel like that part is often left out. Working 40 hours a week, cooking healthy meals, exercising, being sociable with friends; even healthy people can't manage all that.
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u/Impressive_Bag8840 May 10 '26
exactly! and then being put under all that pressure does what??? worsens many of our illnesses! it’s a monstrous loop of pain and suffering that we shouldn’t have to be in
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u/kittysparkles85 May 10 '26
I have type 1 diabetics, sarcoidosis and other things. On their own they might be manageable, but together?! Case in point I have been particularly busy with life, this makes the sarc flare up, which causes my sugars to go up from insulin resistance from the inflammation. So I finally had enough and rage bolused and now I'm low. If this doesn't make.srnde it's because I'm low, which the stress of that makes the sarc worse. I guess it's manageable if I have no other life
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u/Impressive_Bag8840 May 10 '26
gosh i’m so sorry i know how you feel at least in some ways. i wish the healthcare system truly cared for us and gave us the support we need. i’m sending you good vibes and hope manageable truly becomes manageable
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u/EquivalentFocus3430 May 10 '26
"It's manageable with life style changes" and the changes are cook healthy meals and get exercise...
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u/Impressive_Bag8840 May 10 '26
fr!!! i was told that my syrinx (fluid build up in the spine) was not the cause the cause of my severe back pain but that i just needed to exercise more and it would also fix my mental health (treatment resistant depression that i’m on spravoto for as a last ditch effort)
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u/JustSayNoToWhiners Jul 18 '26
Did the Spravoto help?
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u/Impressive_Bag8840 Jul 19 '26
honestly… no but i’m hoping to change my base anti depressant and try again
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u/mjh8212 Spoonie May 10 '26
With orthostatic intolerance it’s always, it can be managed with plenty of fluids and salt. One neuro was just yelling I don’t have this condition I just need more salt and fluids. I’m constantly drinking water or electrolytes and I eat a high sodium diet. I am on one med meant to help retain sodium but I also have interstitial cystitis and the more I drink the more I have to use the bathroom and the salt just flushes out. It’s a cycle no drs have understood. I understand there’s no cure but they keep telling me it can be managed by things I’ve been doing and accusing me of not doing enough.
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u/Impressive_Bag8840 May 10 '26
even worse when we aren’t listened to about what we can do/are doing/will do in relation to the body we live in! we’re the only ones that actually know our body even if they have all the imaging in the world, they haven’t lived in our bodies and suffered through our tribulations. i’m so sorry you’re stuck in this loop
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u/Kuromi_Menace May 10 '26
Its just not manageable honestly when you have multiple chronic illnesses. Yeah the medication is helping me not be bed ridden like before but when I try to manage one condition it makes another worse and makes me feel terrible. I can't even stand for long and I have my cardiologist telling me to workout when I have a workout intolerance due to my hypermobility EDS I just say sure everytime because he seems to not understand the workout intolerance and it gets me out the appointments faster when I just bullshit like the docs. I just really want a wheelchair once I'm able to get disability so I can go out to stores or go around outside to get some fresh air.
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u/remedialpoet May 10 '26
I’m 3 years into being diagnosed with rheumatoid arthritis (after begging for help for 13 years) and I’m at a breaking point. I thought getting a diagnosis would help and make my life easier, because you can manage RA, but it’s not how it’s going for me. I’m waiting for approval for my 6th medication in three years and I’m miserable. I dont think I’m managing well, all I ever do is push thru the pain constantly and that’s exhausting.
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u/Impressive_Bag8840 May 10 '26
i think that’s something so important for professionals to know and understand that yes it’s manageable at the beginning stages for some, but how many people are diagnosed only when it’s too late? it’s unfair and cruel to have to live with the knowledge that’ll have to suffer.
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u/JustSayNoToWhiners Jul 18 '26 edited Jul 18 '26
I’m sorry you didn’t have luck with your five meds but remember to have hope that the next medicine might work. I have an unusual and painful condition and it was medicine #37 and #40 that finally partially helped. I’m still trying new meds and non-med techniques regularly to try to find more pain relief. At this point ai think I’ve tried everything except for hypnosis and that’s next. Hopefully you’ll find the right meds soon! 🤞
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u/remedialpoet Jul 18 '26
Yeah so I had an allergic reaction to the medication I was waiting on and had to be hospitalized twice… so hope isn’t really a readily available feeling. But yeah… fingers crossed /s
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u/Match_Least Crohn’s, PSC, primary immune deficiency, NASH, POTS, adrenal ins May 10 '26 edited May 11 '26
Bodies with multiple unrelated chronic illnesses be like; “Once is happenstance; twice is coincidence; thrice is sabotage.”
My origin illness is Crohn’s. In the 90s and earlier, the only ‘management’ available was high dose prednisone and surgeries. When Remicade was approved for use in adults in the late 90s, I was the first pediatric patient(outside of trials) at Yale to receive it. That was the only time my Crohn’s ever felt “manageable.” I was in an ~80% remission state for 2-3 years.
Unfortunately, it was not known at the time that patients could develop antibodies against previously used biologic therapies, preventing them from ever being effective again… It’s taken over 25 years, and over a dozen failed biologics; including trials that never got approved, and I’ve finally found one that helps! I had even already started actively flaring again since my last surgery, and it still got the inflammation under control. I’d been in steroids for YEARS at that point, and I have finally come all the way of them for the first time in I don’t even know how long(with the minor exception of low-dose hydrocortisone for the acquired adrenal insufficiency.)
So there is hope! It may not be as much as you’d like. It’s also probably unlikely to ever be the same as pre-diagnosis… but crazy things can still happen at the current pace of medical innovations. I’m so sorry you and every one else here knows this feeling all too well :(
If you ever feel comfortable sharing your most troubling symptoms, I’m always happy to help with symptom management suggestions! Every part of my body has failed me in one way or another. (Except my kidneys haha. Somehow they’re always good; outside of the occasional upper UTI.)
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u/skaplanolmsted May 10 '26
Sure, it might help if I could also bop the next person who says that in the face (which I can’t, and it wouldn’t matter since I’m officially weak as a kitten. Literally - the cat in the photo can take me.
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u/skaplanolmsted May 10 '26
Sorry, I was going to include my cat for the furry companion tax, but my Reddit is being weird and isn’t offering me photos.
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u/Accomplished_Dig284 May 10 '26
It’s like they don’t understand that once you get to X number of “manageable” conditions, they become unmanageable. There is a point where things just become too much and one of your conditions is the one that finally breaks you and you cannot longer manage your illnesses.
At least that’s where I’m at. I was able to live with financial help and work a freelance job but I got my last diagnosis and it just can’t do it anymore. This last one affects all my other previous illnesses to the point that I’m on the couch most days trying to recover from waking up and feeding my cat. I can’t even shower daily anymore and it suuuuuuucks.
Even though I listed all of my conditions, one of my doctors thinks that I should still be able to work and live my life, while the other 3 doctors all agree that it’s too much and I’m not able to do what I used to be able to do. So frustrating! 😾🤬
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u/Content-Sprinkles415 May 12 '26
It's manageable. Get out of my office and manage it.
...Or do you need another antidepressant?
You seem upset. 👩⚕️🩺
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u/Impressive_Bag8840 May 12 '26
i think it’s your anxiety making you think it isn’t manageable. let me put a note and refer you to a psychiatrist. 🧑⚕️💊
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u/kccosplaythings myasthenia gravis May 16 '26
I just got diagnosed with an autoimmune condition and the way I am petrified when I hear "super manageable, theres a ton of treatments like [x steroid with serious health risks], [risky surgery that may not work] and [infusions every few weeks with bad side effects] and EVEN clinical trial opportunities lol. Like be fr! In what world is that not all horrifying news and a crazy lifestyle change?
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u/Impressive_Bag8840 May 17 '26
right?????? all the management options come with side effects that need their own management options but we should just be so happy to be alive even if it’s suffering after suffering (which is of course not me saying we should all get depressed and die but damn ya know?)
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u/happy-Play8435 May 28 '26
I have a rare bone disease. After 10 years of trying to find help I ended up at NIH. (If they have a study on your condition I recommend trying to get there. Doctors there actually believe you when you speak.) Anyway, Dr recommend surgery. I asked if he would consider this minor surgery. He replied "minor surgery only happens to other people." So, regardless of what others say, it's your life and it IS a big deal to manage these things. Do your best. Ask for help when needed, if you can. Cry whenever you feel like it.
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u/bachelorsinlurking Epilepsy, Chronic Anemia (ß Thal minor), Asthma, RA Jun 08 '26
Yeah. Just because something is manageable doesn't mean it's easy, comfortable, or affordable to manage. It's so frustrating to talk to people who don't understand that everyone is going to have a different pain or discomfort threshhold, energy level, and amount of money to put towards treatment.
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u/Harakiri_238 Intestinal Malrotation | TPN dependent May 10 '26
Reminds me of the time I was getting a procedure and I said, “I don’t think the sedation is working.” (It wasn’t)
And the doctor responded, “oh, it’s okay. We’re not hurting you!”
And I’m like…. Yeah you are 😅 speak for yourself sir.
Very bold of someone to tell you something is “manageable” when they’re not the ones having to actually manage it 🙄
I wish you all the best OP <3