1. Preface
To say it feels odd to make a phone call home as a patient in a mental institution is an understatement. Yet not too long ago, that’s exactly what I found myself doing. I was calling my mom in Los Angeles from McLean Hospital in Boston to let her know I had safely checked in. I was a patient in its Obsessive Compulsive Disorder Institute, a residential facility where people whose lives are severely hampered by Obsessive Compulsive Disorder (OCD) come to hopefully get better. One has to apply to McLean’s OCD Institute and if a review panel deems you qualified, meaning in serious need of treatment, then you are granted one of their twenty residential spots. Having been a Los Angeles resident at the time, why did I head all the way to Boston for treatment? As OCD is a relatively newly diagnosed mental illness, there aren’t many residential psychiatric facilities that treat it. In the U.S. there are still less than ten. McLean’s OCD center is the most reputable and known for its beautiful campus, so that’s where I headed. I wanted to regain some sense of normalcy. I wanted to no longer avoid people and places that my mind deemed “contaminated.” I wanted relief after many years of mental anguish and being compelled to engage in odd behavior. I wanted all those things, but I admit I also wanted to get better at a place where I could half pretend I was on a “rest vacation.” McLean’s grounds, which were designed by famed landscape architect Frederick Law Olmstead (who later became a patient), are indeed incredibly beautiful and the residential buildings are still the original 19th century structures covered with ivy.
McLean’s storied past further enabled me to trick myself into my make-believe reason for my “sojourn.” At its founding in 1811, McLean was a mental facility for the advantaged and often noteworthy. It’s was where famed MIT mathematician and Nobel Prize winner John Forbes Nash received treatment at the same time that Pulitzer Prize winning poet and Harvard instructor, Robert Lowell was a patient. Sylvia Plath wrote her most famous novel, The Bell Jar, borrowing from her experiences at the hospital. Even Ray Charles and James Taylor reminisced in popular songs about their time at McLean. It seemed if you were a patient at McLean, it was unlikely that sometime in your past you had tipped a cow, or auditioned for a reality show.
However, after my arrival, I quickly understood McLean wasn’t a Martha’s Vineyard cottage rental. Inside the historical structure of North Belknap where I was to live for the next few weeks, was a sparsely furnished, very drab, well….institution. The common living areas were bleak, and the bedrooms felt like communism. My mattress and pillow were permanently enclosed in plastic. The furniture was stark. Affixed to the wall was a small, scratched mirror. That’s it. The bathrooms (think gas station restrooms) that all residents used were kept locked at all times and access had to be granted by staff. Oh and you had to let the staff member know if you needed amenities such as soap and toilet paper as the bathrooms contained none. It was all a shock to the system that made me acknowledge this was a hospital; I wasn’t there to vacation, but to get better.
Another thing I soon noticed was how socially apt the other patients at the OCDI were. No one was walking around like a zombie with drool spilling out of their mouths. On the contrary, many patients were intelligent, witty, gregarious, charming, and from all walks of life. While I was grateful for the sociability and geniality of my co-patients, I could see they were tormented and I understood. Just by being there we shared an immediate bond born of suffering to such a degree that compelled us all to take the unexpected, desperate, and drastic measure of seeking help at a residential psychiatric facility. But we got ourselves there, finally, and that gave me pause. See if I hadn’t received treatment by the highly qualified staff at McLean, my life would be veering ever closer to that of Howard Hughes in his later years. In short McLean’s OCDI saved me. But receiving such salvation doesn’t come easy and even when found, isn’t always accessed.
While McLean is no longer a place where only people with means can come to get better, it’s still a daunting destination conceptually. We don’t ever want to feel like we need to be at a place like McLean. There’s shame in a lack of mental fortitude, let alone admitting to a debilitating mental condition and needing help for it. There needs to be greater understanding and acceptance that healthcare – need of care for health – isn’t just about the physical ailments that can substantially impede functionality and quality of life. Since I was able to access professional help, I now know the extreme difference between living a healthy, functional, and happy life from merely struggling to cope in a painful existence. As a result of the treatment I received and the perspective I gained, the next time I see an oddly behaving person or someone who may seem askew of some determined norm, I will try not to judge them harshly. I know better now.
Granted, I don’t walk around eagerly sharing my experiences as a badge of honor. People don’t usually respond with effusive praise, or even passive disinterest when one states one has spent time as a patient in a mental health facility. The usual response is an awkward one with trepidation to know why. Again, there’s still a lot of stigma attached to mental illness. For that reason I long made no mention of it to anyone other than to my closest of family and friends who already knew about it and supported me. However, avoidance is something I learned to try not doing at McLean, so fear that my confession of having been at McLean would yield some embarrassment is now overshadowed by two things. One, having come out of the proverbial “other side” makes me feel compelled to share my story with others who may be suffering as badly as I once was and who may not be aware of, or still afraid to seek the right professional care. And two, the whole OCD ordeal and my form of it (which was antithetical to my education, knowledge, upbringing, and nature), made me do a lot of thinking – the good kind. And through this deliberation, I learned to be more accepting of myself and less afraid of judgement. *See About The OCD Memoirist section.
I don’t want this blog and self-reflection to feel pedantic or like it’s catering to placement in a bookstore’s Self-Help section. I just want it to be of some benefit, whether it brings some levity to those in need of it, or a sense of connection to those who feel very alone in their pain. I want to use what I incurred and learned as a severe OCD sufferer for something good. To borrow from my friend, to “turn pain into purpose.” So here’s my story based on my experiences and the journal I kept during my time in treatment and sometime thereafter.
* Unfortunately, I had to turn off the “comments” function on this blog a while back. Despite the very kind feedback and comments, the blog was also getting spammed frequently, sometimes with links that could corrupt the site. However, I still love hearing from readers, so please don’t hesitate to send me an email via the Contact section.
Hi Farsh, I am very happy to have stumbled upon your lovely blog. I am so appreciative that you took the time to write about OCD so intelligently and sensitively–and with that self-deprecating gay humor! I am going to give this for my daughter to read–she is 13 and is really struggling with OCD. She too is very focussed on normality and very much does not want me to know her struggles. I breaks my heart really to know she is suffering but won't allow me to help her–but hopefully she is more open with her psychologist. Anyway, it does my heart glad to know you are doing well and living the life you want to be living. You seem to be a lovely person. I'm sure your parents must be so proud of you.
Btw, I think you should consider publishing this blog (which some minor editing) as a self-published book under amazon. There is very little for parents or children to read that isn't pedantic self help stuff. I think you'd get quite a large readership–once it caught on (ie. once people reviewed it well etc.) Anyway, you are a gifted writer. You have a lot to write about. Be well.
Thank you so very much for your very kind words, fortysomething! That means a lot. I had such trepidation about publishing this blog and making it public for the longest time because of the judgment, embarrassment, etc. However, feedback such as yours is exactly why I know I did the right thing by making it public, so thank you again for your comments.
The stigma needs to be removed and I hope your 13 year old will come to understand that every person deals with some issue of some kind, but as long as she is dealing with it, she doesn't need to be ashamed to share her feelings and her struggles with you. Again, much easier stated than done and 13 is a difficult age to deal with in general, let alone with OCD.
What's important for your 13 year old to understand is that SHE is very normal. She just is afflicted with a mental condition that is trying to make her feel anything but, however she will win out. As long as she addresses it with a therapist and is supported, she will learn she can manage it and it will very notably diminish. As more people are open about their struggles with OCD, it's commonality will be more evident. Your 13 year old should know that by tackling and eventually overcoming the encumbrance of something as tremendously mentally burdensome as OCD, she will be in a good place to take on and overcome a lot of things 🙂
And thank you for the encouragement for me to continue writing! I have found it is something I do like to do and reception such as yours make it very worthwhile!
Does staff show compassion or are they too busy and patients seem as though just a number?
Hi Patrick. The staff does indeed have compassion for the patients. Considering what they deal with, they have to. However, staff have to walk the line between being compassionate toward patients while not enabling patients' OCD. Staff have to discern between what constitutes affording helpful support and assurance that can be harmful and catering to one's OCD, and I imagine it's not always easy to differentiate between the two. A patient's assigned BT, or Behavioral Therapist is the one that offers the most emotional and psychological support as they're the ones primarily tasked with formulating a treatment regimen for the patient. The others on staff are supportive but have to follow protocol with how they interact and deal with patients so their therapeutic care is far more limited. It's very important to have an honest, trusting rapport with your BT as ultimately he or she will help you get better. I was very fortunate in that my BT was amazing. He understood me through and through, not just my OCD but my personality separate from OCD, and that enabled me to develop a very strong bond with him. Before McLean I had received outpatient treatment at other facilities, including UCLA's OCD treatment center and I can state without any hesitation that the knowledge and approach McLean's staff have with OCD was exceedingly far superior to any other place I had been to. So yeah, at McLean they are very compassionate, while also committed to having you do the very hard work it takes to get better, which is just as important
Hi Farsh. Thank you for sharing your story. I would love if it I could talk to you privately. I hope you don't mind, but I messaged you on Facebook. I haven't heard back from you, so I'm wondering if perhaps my message went unnoticed in your 'Other' inbox. I would extremely appreciate it if we could talk. Thanks and I look forward to hearing from you!
Hi Farsh,
I am happy to read your post. My 21 year old son is due to go to Mclean any day. He has been struggling for 5 years. He has tried intensive outpatient therapy and individual therapy for several years. To me, he seems happier when he has tried medication, but he doesn't like the way it makes him feel drugged. I am hoping McLean is good at dialing the medication issue in. Reading your post helps me realize that when our insurance no longer allows him to stay, we will pay out of pocket to complete treatment. I am even considering the option of having him stay in Boston for after care, if available through an out-patient program.
Joy
Hi Joy. Thanks for sharing a little about your son's struggle. It's great to hear he's seeking treatment at McLean. Before McLean, I did out-patient therapy and other therapies, along with a prescription medication regimen as well, and I have to state, I didn't improve much. Coming to McLean and residing at a facility made a huge difference. I think a residential facility is best because you have constant support and supervision which I feel is essential toward getting better in a meaningful, tangible way. The tools you learn while at McLean are reinforced and practiced continuously which is the only way to get OCD to eventually subside. If left to one's own devices, one will always acquiesce and cheat by ritualizing which voids any earlier progress, and one will ritualize without constant support and supervision from those trained to treat OCD. OCD's grip is just too strong to do it alone.
McLean was also beneficial with my medication regimen. They placed me on a completely different medication and actually a milder dosage so I was able to feel some relief without feeling drugged up. As for after care, that's always a great plan. Like a fitness regimen, one has to keep at it to sustain results. I eventually ended up moving to Boston and so I was able to see my same therapist from McLean whenever I felt the need. However, McLean does afford the tools to manage OCD properly on one's own, but having accountability and support is always helpful when self-management under heightened stress starts to feel a little difficult. It's all about maintenance. We all need a little tuning up now and then, so an out-patient aftercare program post McLean is smart.
Again, I think it's both courageous and a great decision to seek residential care. OCD is so incredibly consuming and difficult to deal with and I hope your son finds some real relief. I hope the best for him.
Thank you Farsh for your reply. It is very encouraging, especially with regards to the medication regimen. Good to hear they are open to a milder dosage because he was given such a high dose of Prozac, and eventually stopped. Hopefully he will be able to go for at least 3 months.
Well, I will be rooting for him 🙂 It may be very daunting, and incredibly challenging work, but I encourage him to just keep pushing through OCD's pushback, with the support and supervision of his team, as much as he can while he's there. The reward is extremely well worth it
Thanks for the comment and I agree! Except for Ina (she's awesome) Food Network is almost unwatchable and given that ratings are steadily declining it seems to have proven a failed programming strategy. The reality/competition mandate is ultimately the work of the current programming heads, so they should be held mostly accountable. Perhaps with all the re-branding on Food Network, it's time to look to a new brand altogether. I'm now an avid viewer of PBS and quite pleased with their offerings.
Hi Farsh, Thank you so much for your brave posting and blog. This is really a service to others. I found your personal accounting very informative as I struggle to find the right option for my son. My son is 19 and has lost 2 plus years of his life due to likely PANDAs/OCD and/or OCD Proper plus/- other issues. It is so disabilitating that he is homebound. His doctors believe that he may have PANDAS/PANs an autoimmune condition that causes severe OCD. We are hoping that treatment will help but the OCD is making him resist the treatment. It is devastating. I too see that there is a paucity of good solutions in California and the entire country. Thank you again for postings.
Thank you for reading the blog and for your very kind words! They mean a great deal and validate my decision to start a blog 🙂 I'm sorry to hear your son is struggling so much. OCD is indeed very devastating. The stress and pain of loved ones of an OCD sufferer is yet another awful consequence of OCD. The important thing to keep in mind is that there is treatment and it can be very effective. It took me a long time to get to the place where the misery of suffering trumped my irrational OCD fears so that I was willing to submit to proper treatment. For me that entailed committing to a residential treatment program (earlier visitation treatment sessions failed) and when I did, fortunately I was matched with a therapist who really understood what would be effective for me, and I benefited tremendously. That's not to mean I was cured., There isn't yet any cure per se, but what I gained from my residential treatment were the proper tools to manage OCD to the extent that it's greatly diminished, enabling me to function quite well and be happy. And now, in more vulnerable moments when OCD does rear its head, I know how to respond to it so as to get it back in check. It sounds like your son's OCD is further exacerbated by his other conditions but that doesn't mean it's not treatable. Every OCD sufferer has somewhat of a unique circumstance and your son is just another example of that. He should know that he can get better and his life, and yours, will vastly improve with the proper treatment. I would suggest talking to someone at McLean Hospital's OCDI. That's where I ultimately received the most effective treatment. There are other options that may be right for your son, but McLean is where I know and perhaps they can afford some initial guidance. I hope your son gets the treatment he deserves soon. He can better and I believe he will. Thank you again for your very kind comments! I’m pulling for your son!
My son may be entering the OCD treatment at McLean. This blog is incredibly helpful, but also raises concerns for me. He will have to take a leave from school to do this, and I am worried both that he won't be strong enough to stick it out and in that case, he may not be able to return to school. Do you have any insight into how to get a feel for whether someone can stick around for the treatment? Your post where the Harvard student leaves the first day made me very nervous. Do they make any attempt to persuade/encourage someone to stay if they are having a hard time? I am very frustrated with OCD treatment: while I understand that a person needs to be willing to participate and work toward their own treatment, the attitude seems far too passive in getting people help. If my son were suicidal people would be all over pushing hard for him to get treatment. But in my mind, he is suicidal, it's just a form of suicide that is covert and insidious, but in the end will have the same result if he is never able to get treatment. I'd really appreciate your comments as someone with inside experience.
I'm glad you found the blog helpful! That's the main intention. If your son is taking a leave from school due to disability, would his school be flexible about the timing of his return? I think it would be a good idea to get all the information on his school's leave of absence policy to avoid any ambiguity down the line. As for McLean, I can't represent their program or how they handle individual patient situations. I can only relay what I know from my experience as a former patient. Every patient is an individual and I feel their treatment approach takes into account the individual patient's needs, but again, I would inquire with McLean directly and ask the questions you feel you need answered. That stated, from my experience, I found their treatment far from passive. They know it's a huge struggle, but want the patient to get better and are very attentive toward that goal. But, to getting better is very hard work. As you may have inferred from my blog, there were times I wasn't sure I could push myself enough and endure the strain of not ritualizing. As I'm sure you have witnessed from your son, OCD is incredibly consuming and influential in the decision making process. Often, it is ALL-consuming, overbearing, overwhelming, and forceful. However, ultimately, with the help of my therapist, the staff, and my own forced mantra that enduring the intense discomfort from the ERPs would lead to REAL relief from OCD, I kept on my treatment path at McLean. From my observations, the staff there are great about affording the right encouragement and supervision, including during the very difficult patches in treatment. However, they can't force a patient to do the work that's needed, or stay. If the patient isn't ready, and by that I mean, struggling too much against the treatment plan and efforts toward improving, then there's only so much that can be done. Since space is also limited at McLean, patients do receive very individualized care, but that also means there's often a wait list of people seeking treatment. A patient who is there but unwilling to do the needed work to get better could be taking up the space and resources that could be afforded to another sufferer. Your son has to want to get better and be willing to push himself hard to get better. His therapist and staff will strongly and caringly support him and work hard toward the goal of his tangibly getting better by learning the proper management tools and finding real relief from OCD, but he needs to be open to the treatment and give it his best effort as well. McLean helped me tremendously. It didn't cure me, there isn't a "cure" and I still struggle from time to time with OCD but far less than I did, and now I know the proper practices to keep my OCD at bay. I went through many therapists before residential treatment at McLean and all of the others did little to benefit me. McLean was the only treatment that really worked for me. I was also fortunate in that I was very compatible with my therapist and he really understood me. He knew when I was avoiding something, despite my efforts to fool him and even myself, and worked with me to change that but I also was willing to work with him to make any needed adjustments. Again, I would reach out to McLean and talk about your son and the treatment process with them. And you're absolutely right that a sufferer of sever OCD is in a critical mental state. McLean does indeed understand that well and that's why they're there. They help those of us who suffer to that extent and are in dire need. I hope your son receives whatever treatment works best for him to get him well. I can attest to how much better and happier life can be after finding real treatment and learning the proper tools. I feel your son will know that too. We can and do get better and I hope your son will be among those who will eventually know this too. He needs to fight the good fight and he can win!
Found your blog through Salon App. Very brave of you to let people into such a private aspect of your life. The world is filled with stigma. Only by having open discussions and vetting the Healthcare Industry's treatment of mental illness can we begin to help and heal the many who are affected. BTW, Go Gauchos! Proud to see a fellow Gaucho's success.
Thank you so much Carlos! That really means a lot 🙂 Yeah, that's why, despite a lot of initial reluctance, I decided to be public about my OCD – to try to diminish some of the stigma and try to convey that mental illness doesn't really have a stereotype. It affects so many. And yes – Go Gauchos!!!! 🙂
Hello,
My daughter (15 years old) had serve OCD that caused her to become home bound for about 4 months last year. The good news is that medication (250mg og Luvox and 1mg Abilify) has made a huge difference. Ocd is no longer an issue in her life (went from a YBOC to 6) but unfortunately the medicines have completely changed her personalty, she is not focused, unorganized and so tired. I would like her to go to the McLean Jr facility with the hopes of decreasing her meidicines so she is more herself.. Am i asking too much? i don’t want her to live her life drugged up!
Hi and first off, I’m very glad to hear your daughter is doing much better! 15 can be a difficult age on its own with all the typical teenage insecurities, but compound all that with OCD and it’s exceptionally challenging! The issue of the effects of medication and which combination of meds work best for addressing a person’s OCD is very commonly talked about and mulled over, and it varies greatly. Considerations include the amount or dosage needed and possibly pairing one medication with another, etc. Many of my friends and co-patients with OCD would change medication that may have helped with their OCD but were yielding other effects, like lethargy and “fogginess” that they didn’t want. Coming up with the best regimen that feels right and is most effective can sometimes require medication changes and adjustments. I myself tried at least 3 different SSRIs before arriving at the one that proved most effective for my OCD and compatible with my body chemistry. Ultimately, this is a conversation one should have with the patient, the patient’s doctor, and the patient’s therapist.
As for McLean, they offer excellent behavioral therapies (the best in my opinion, but I’m biased), but treatment there still usually includes a medication regimen in addition to behavioral therapy. It’s best to contact them directly and get information from someone there who could provide far better advice and guidance than I can about their program and if it would be a good fit and possibly beneficial for your daughter. However, again, it’s really great that your daughter is now managing her OCD and symptom free but if you have concerns about her medication’s side effects, you should address these with her and her doctors. I hope that helps and thank you very much for your your comment!
My I ask how restrictive McLean’s OCDI residential program is? Are you free to leave the campus (e.g. if one had dietary restrictions) or are you fully committed and institutionalized? You had mentioned that one must request soap and shampoo from the staff before using the facility’s showers. I’m wondering if that is because of the concerns for ritualizing (e.g. contamination fears) or is it a result of the strict and rigid institutionalization at McLean. Could you please describe more of your experiences with regard to freedom you had as a patient? Was medication forced?
Thank you for your question. Like any treatment program, McLean had rules and regulations that patients had to abide by. One can opt to leave at any time but for the program to be effective, it’s best to see it through until an end date that’s determined by you and your team in conjunction with insurance coverage. Since McLean is a hospital, there are patient safety and other liability issues, so patients are allowed time off campus, but it has to be approved. A structured schedule is an important aspect of the program so time away from campus during the week is part of a schedule. On weekends, patients are allowed time away to see family or take trips into the city, etc. and these are unsupervised. There are also supervised trips off campus too and a lot of the treatment (ERP) can take place off campus, so sometimes I would head into parts of Cambridge with my therapist or a counselor for ERP sessions. I did have to request soap, toilet paper, and access to the bathrooms, and yes, that was due to ritualization. Some patients’ morning showers were timed, but again due to ritualization and treatment and something that was assessed on an individual basis. It’s a lot of work, but that’s why you head to McLean – to do the work to get better. There are standard rules of conduct that all patients have to follow (like any residential treatment program) and an individual patient’s treatment program may have some customized rules depending on that patient’s OCD. These are all meant to benefit the patient and make their treatment as effective as possible. I didn’t find it too restrictive. What I was restricted from doing was what I was there to try to stop doing and those restrictions weren’t imposed upon me harshly, but with care and great understanding. I really found every measure McLean had in place was designed for the benefit of their patients. I also was very fortunate because my behavioral therapist understood me very well and knew when I was trying to weasel my way out of something for the sake of OCD rituals, yet his method of trying to prevent me from ritualizing didn’t ever feel forced or adversarial. He would enable me to see that he was on my side and against my OCD which in turn encouraged me to do as much as I could to battle the compulsions and rituals and try to be less of a weasel 🙂