What we thought we knew about OCD were the stereotypes. But we now know it’s so much more than counting and checking knobs.

I thought it was a preference for cleanliness and order. But it’s not about preference at all. It’s about survival.

Because it’s not like anything else. It’s unique. It’s malicious. It adapts. It threatens everything that means something. With a threat so real that it strips away any quality of life; extinguishes any flame of hope, of future, of self. It can stop a beautiful, intelligent, creative, and compassionate mind with dreams and potential, and paralyze it.

There is no more helpless place to be as a parent than to watch it take hold of your child’s mind. To watch them live in a constant state of fear. To see terror in their eyes as they scream and beg for any relief- relief that you can’t provide- is excruciating. To sit idly by every night as they bawl themselves to sleep- asking how to make it stop. No level of comfort or reassurance you give can help them; all you can do is be present.

For the past year, our daughter Mila has struggled with untreated OCD. We now know that this is something she’s battled for much longer than we realized. A misdiagnosis of generalized anxiety unfortunately enabled her OCD to progress to the point where it now impacts every aspect of her life. Our treatment journey to this point has been a roller coaster of hope and disappointment. Going through the behavioral health motions of relying on referrals and being put on wait lists only to find the therapists we’ve been paired with are unequipped or under skilled. With each change in provider, we’ve seen her lose more hope, believing there is no one who can help her.

A brilliant and creative artist – she’s unable to pick up a pen and draw. A smart and thoughtful student- she’s unable to attend school. An independent and free thinker- she is unable to make decisions or be alone for too long. OCD has taken hold of every facet of her beautiful and thriving life. Her actions are dictated by compulsions and rituals; washing her hands until they crack and bleed, unable to leave the house or sleep in her own bed. She now spends hours sitting or standing in one place- for fear the wrong movement, statement, or decision will cause something extremely bad to happen. A truly isolating disorder, we haven’t been able to hug our daughter in months.

OCD affects about 1-100 kids and what many people don’t know is that it is one of the more debilitating anxiety disorders. Unlike PTSD and GAD, OCD has a neurological component. The amygdala- the fight or flight area of the brain- is in hyperdrive and inappropriately perceives threats. Typical therapies used to treat other anxiety disorders are not effective for OCD and can actually make someone’s symptoms worse. It requires a very specific type of therapy called Exposure and Response Prevention (ERP), which is considered the gold standard in treating OCD and has great success rates. Much like physical therapy strengthens and retrains muscles, ERP applies customized exposure therapies to train the brain to more appropriately respond to perceived threats; to build skills and regain control.

There are few legitimate providers who are trained in ERP and adolescent OCD, and varying levels of treatment are required depending on the severity of symptoms. Unfortunately, our struggles to maintain a continuity of care for Mila has brought us to the point where an intensive in-person program is necessary. Luckily the most affordable facility is within a six-hour drive from where we live and happens to be the best in the nation, the OCDI JR program at McLean Hospital – a Harvard affiliate.

The good news is, they take insurance. The bad news- they don’t take ours. They do have a private pay option, but unfortunately, being out of state, we don’t qualify for financial assistance beyond a self-pay discount of 25%. The cost of the program is $24,780 for 30 days- we’ll need a minimum of 60 days. To be placed on the admissions list, they require 30 days upfront.

This is a wildly humbling experience. Anyone who knows Jeff or I understand that we’d rather chew our own arms off than ask for help. But we’re desperate to get Mila’s life back. We know it’s not the best time of year- everyone is spread thin. But we have to do anything we can to save her and we earnestly appreciate anything you can do, even if it’s sharing this with your networks.

Thank you again for taking the time to read this. If you are interested in learning more about adolescent OCD, more info can be found here .