Don’t know what the answer is

@NotThatHardcore Not well. I’ve tried to do ERP but everything is so overwhelming because the ocd is severe. I do compulsions pretty much all the time including while trying to fall asleep, so probably more than 12 hours a day

@anonymous23635 That makes sense. The OCD cycle tells us that compulsions are what feed and intensify OCD. It’s like a volume knob. Compulsions are also the part we have control over. Resisting compulsions is super hard at the beginning, and things often get worse before they get better, but in the long term, reducing compulsions is what reduces the intensity and severity of OCD. If your therapist hasn’t helped you figure out how to resist compulsions, it might be time for a different therapist?

@NotThatHardcore The therapy situation is a bit complicated. I’ve had multiple therapists throughout the past 5 years, recently one in my hometown and one away at college who was a grad student in training with someone at an ocd specialty center. The one at college told me that because I’d seen no progress with therapy, that they wouldn’t be able to accept me as a patient in the fall unless I did residential or a PHP at Roger’s behavioral health or McLean. The one at home who is also an ocd specialist thinks when I’m able to do ERP, I should go to Roger’s behavioral health as well. The one at home thinks that my ocd is too severe for ERP to be effective at the moment, and something like TMS or medication which I’m trying needs to bring down the anxiety level before to make ERP more doable. I met with the therapist at college twice a week and he was good, but we didn’t make any progress, partly because I have so many obsessions and the ocd is so complicated that we might try to do ERP for one theme and mid ERP I start worrying about an unrelated theme

@NotThatHardcore When I try to resist compulsions I literally have to hold my breath to not do them, which is weird but it is so painful that when I’m in public, or at work, I have to do mental compulsions to function, because if I don’t, it’s so bad that I can’t function. I’ve also tried chipping away little by little and that hasn’t worked

@anonymous23635 What’s stopping you from accessing a higher level of care?

@NotThatHardcore My parents. They said I’m not doing Roger’s or McLean over the summer or missing a semester of college to do it (I’m 20 years old going into senior year). They said I need a full time job at the end of college, and a full time job wouldn’t like me taking off time for Roger’s. Plus my mom said cause I can’t do ERP it would be ineffective. My parents make me pay for my mental healthcare, and I could probably afford it, but they would say I can’t. I’ve also looked into surgeries for ocd which are uncommon like deep brain stimulation, cause that is what my psychiatrist is recommending if TMS doesn’t work, but they said I’m not doing that either. The only other thing I could do is spravato which is the nasal version of ketamine, but they said that’s unsafe. I’m trying to figure out what I can do to make the ocd better in the meantime if I can’t do these options

@anonymous23635 It sucks that your parents won’t let you do what your therapists recommend! But also, it’s your life. If they’re paying for college, it might be hard to go against them, but it sounds to me like at some point you might need to take control. If you’re in charge of your finances, you might have more ability to do that than it might seem on the surface.

@NotThatHardcore Yeah I agree. I could always try to do it over the winter, but I’m sure they’d be against it. I also get tuition exchange from my dad’s job, so as long as I don’t fail two classes in a semester, I get free tuition. My dad does not want to lose that which makes it complicated taking a leave of absence mid semester. If I just said “I’m doing it and that’s that,” technically my car isn’t under my name so they’d probably try to take the car so I couldn’t drive to it, and make it very uncomfortable. My mom once said that she was having chest pains at the store, basically somewhat putting that on me saying the situation with me caused it. She also said I could cause a health issue because of pressing. When I have ocd and she’s saying that, that is not a good combo

@anonymous23635 All of that sucks! It sounds like the main lever you have is doing response prevention when you have the chance to not need to function for work or school so much. Response prevention applies across all themes, is the good news. Other than that, it sounds like there’s some waiting to do, until you are in a position where you are able to access the recommended treatment. Does that all sound right?

@NotThatHardcore Yeah probably. I could push my parents for it more but they will get angry. I don’t know if Roger’s would help cause I don’t know if I’m able to do ERP. If I’m not able to do ERP and Roger’s doesn’t work, that probably means I need a surgery like deep brain stimulation or anterior ventral capsultomy to make ERP tolerable, because I’ve tried almost every medication, and now 20 sessions of deep TMS and it hasn’t worked. My mom said that brain surgery is crazy but she can’t stop me once I’m out on my own. I think at Roger’s they’d really be able to evaluate whether or not brain surgery is necessary or if I just need more intensive ERP, but unfortunately I probably have to wait a year

@anonymous23635 I feel the unfairness of your situation. I wish I knew how to get parents to make good decisions. Good luck with it all

@anonymous23635 I realize I want to loop back and say, back during the early pandemic I desperately felt I needed a higher level of care and things were super severe, but I couldn’t access it. I had so many themes, too. It took a long time, but once I got a handle on response prevention — without even much support from therapists, really — my symptoms improved a ton

@NotThatHardcore My OCD felt really complicated, but that’s because I was engaging with it. In reality, it’s the same pattern over and over again, and requires the same response prevention every time.