OCD and Family Involvement

credit: Stuart Miles. freedigitalphotos.net

credit: Stuart Miles. freedigitalphotos.net

My friend Angie over at OCD in The Family recently asked her readers about their thoughts on parental involvement in their children’s treatment team.  About a year ago, I wrote about some of my family’s disappointments in this area when my son Dan was at a residential treatment program. I think it’s an important topic that’s worth revisiting.

What I wrote to Angie, and what I firmly believe, is that parents are the experts on their children. Of course each situation is unique, and there are certainly exceptions, but in my opinion there are rarely people who know our children as well as we do. We take our children to psychiatrists, psychologists, and social workers, who see our children suffering, often in the worst condition of their lives. Good clinicians know how to treat OCD and other mental health disorders, but there is no way they can really know our children. That’s where I believe parents can be an invaluable resource, giving insight into who their children are when they are well; what makes them tick. This knowledge can go a long way in helping providers who are formulating a treatment plan.

Angie brought up an issue that is at the opposite end of the spectrum. Many parents automatically defer to the “experts,” assuming that they themselves have nothing to contribute. After all, these professionals deal with OCD all the time. What could they possibly tell them that they don’t already know?

What is needed, and what is most helpful, is collaboration. Therapists need to take parents seriously, and listen to what they have to say. Indeed, parents should be encouraged to be involved, even if they are inclined to “defer to the experts.” Another important ingredient in this mix is respect. I have heard from too many parents who have felt unwelcome in their own children’s treatment. This is unacceptable. What we all have to realize is that each of us comes into the treatment process with our own expertise. The therapist knows OCD and the parents know, and love, their child. Working together will likely culminate in the best possible outcome for the OCD sufferer. And really, isn’t that the goal?

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15 Responses to OCD and Family Involvement

  1. Astrid says:

    You raise some interesting issues. I have experienced myself that my parents thought they knew what was best for me in spite of most clinicians’ opinions. They were in denial of my mental health/developmental disorders and took me to a new professional repeatedly until they got the answers they thought were correct. I have had difficulty involving my family in my treatmetn now that I’m an adult. I don’t involve my parents at all, and have a hard tiem involving my husband.

    • Thank you for sharing, Astrid, and I understand what you are saying. I am talking generally and realize there will be parents who are in denial, or are not helpful for other reasons. I’m guessing for you, as an adult, it is now easier to not have to involve your family in your treatment. I’m sorry you did not have the support you needed when younger, and wish you all the best as you move forward. Thank you for this important comment.

  2. Another Mum says:

    As a parent who is currently involved in doing exposures with my daughter (16), I really appreciate the encouragement to stay the course in doing this work. It’s heart-breaking to hear of her pain and doing exposures can be exhausting but little by little there is progress. Although there are somethings she is not comfortable telling me, i am hopeful she can work on these areas with her psychologist. As an aside to Astrid’s comments in our case we could not get a diagnosis for OCD for several years as 4 different psychologists and 1 psychiatrist missed it, so we were floundering for 3 years with my daughter sinking further and further into depression, self-loathing, and the grips of OCD. So in our case it was crucial to keep looking until we found a psychologist able to do exposures effectively and teach her dad and I how to do them with her. It’s a very tough cycle to claw one’s way out of. To Astrid, I do wish you the very best in getting appropriate support for your OCD treatment.
    Janet, you’ve mentioned in previous blogs about the out-patient treatment program that worked well for Dan. Are you at liberty to give the name of it ? Because we must self-pay when coming to the States for mental health care I would appreciate it if you could.
    Thanks very much for your blog. I turn to it often.

    • Oh, your story of floundering and trying to get the right help is way too common, Another Mum, and that is one of the main reasons I keep on blogging. I am so sorry you had those experiences.
      You seem to be intricately involved in your daughter’s treatment and I’m sure there are a lot of pros and cons to that. I give you a lot of credit as I imagine it can be frustrating and draining for you at times. When it came down to the actual ERP therapy, my husband and I were not involved at all.This was Dan’s choice and of course we respected that.
      I’m happy to discuss in more detail what worked for Dan and what didn’t. Feel free to email me at: ocdtalk@yahoo.com.

  3. Teri says:

    Good post as always. But I believe that family should be involved only if they are capable of being supportive. Mine is not. I’ve had to move home because of my OCD, and I’ve now been here for a year. I have a very hard time leaving the house or throwing anything away because of my OCD fear of losing something. I’ve been screamed at, scoffed at, etc. because of my compulsions. They talk constantly about how much I’m stressing them out and how “selfish” I’m being, saying that my OCD shouldn’t be their problem – completely not understanding that my compulsions are stressing me out much more than anyone else, and that I didn’t ask for this any more than they did. And really, I believe that if it “shouldn’t be their problem,” they should never have made me move back here in the first place.

    Any progress that I make is generally undermined as well – they either don’t notice or tell me I should have been able to do more. They have said many times also that I’m not making an effort to get better, when they have no CLUE what is going on in my head day in and day out, and that every MINUTE is an effort for me. They often shame and demean me too, telling me I’m 29 and shouldn’t be living at home, etc., as if I’m just a loser who’s mooching off of them rather than someone who is sick, not to mention that THEY BROUGHT ME HERE IN THE FIRST PLACE. And I HATE being here even more than they hate having me here, but they’re not making it easy at all for me to get to a point where I can leave.

    They yell at me for my slow recovery, but seriously, what do they expect when I’m in this unsupportive family environment? Their ignorance and negativity is making it impossible for me to get better, to the point where I kind of wish they had just left me to my own devices. Even if I would be out on the street by now, I think I would have been better off fending for myself homeless in the freezing cold than with my family. I’ve been forced to focus more on dealing and coping with them than on fighting the OCD, and I really feel that if it weren’t for them, or if they were able to be more supportive, I would have been better and out of here six months ago. They are holding me back from recovering and living my life, and I don’t know if I will ever get better in this environment. Because of my OCD, I can’t even leave, so I don’t know if I ever will get better at all. I’ve considered suicide a few times in the past year, because it really seems like the only way out – I’m pretty sure I would never actually do it, but there have been times when I wanted to.

    They’ve read books, been to support groups, everything. I even brought them into one of my therapy sessions so the therapist could explain to them how they need to behave with me – now I’m seeing that was a total waste of half a session and the money I paid for it. I’ve given up on getting support from them, because they just don’t have it to give. For me, unfortunately, my family is going to have to be an obstacle in my recovery rather than a source of support.

    • Wow, Teri, You have given me a dose of reality here, and I am so sorry you are in this difficult situation. It breaks my heart. I wish I could fix this for you, and hope you are working with your therapist to make some changes that will benefit you. You have given me a lot to think about (which will probably result in a post) and, again, I am so sorry you do not have the support from your family that you deserve. I will keep you in my thoughts and wish you all the best.

  4. I think parental involvement depends on the issues. When my therapist tried to involve my parents it was a disaster. I didn’t want them involved. Eventually my therapist has to tell my parents that it wouldn’t work with them being to involved because none of my issues were with them. I have explained that to my parents recently and they understand.

    Maybe if i had gone the inpatient route I would have a different opinion but my parents did play a key role in keeping me out of the hospital which I appreciate.

    • I think your comment brings up a good point. Well-meaning parents can be helpful in certain situations, and not so helpful (or even hurtful) in others. Your parents helped keep you out of the hospital, but you don’t find it helpful for them to be directly involved in your therapy. I think that’s great that that was communicated to them, and they understand. Parents should be there when needed, and back off when not, as long as the lines of communication remain open. Your parents sound supportive and understanding. Thanks for sharing!

  5. Janet, Beautifully put. Productive, positive collaboration is key. Supportive parents and family members who are brought into the treatment loop can significantly help improve treatment outcome and ongoing success. – Angie

  6. Thank you so much for sharing your experiences, Sunny. Why is it that love and concern are often labeled as “meddling” or “interference?” Your doctor sounds like a real gem, and I am so glad you and Jim found him. I wish all doctors were like him!

  7. Great post, Janet! You raise such important issues. My parents weren’t involved in my treatment for OCD, unfortunately. But in other areas of my life, I have found it disheartening when my concerns about a family member have been met with disrespect by medical professionals. To me, that’s a sign that the doctor, nurse, etc. is not really tuned in to the patient, either.

    • I think that’s an excellent point, Tina. If professionals are disrespecting, or at the very least not listening, to loved ones, they are doing their patient a disservice. Thanks as always for your insight.

  8. Great post Janet and as always thought provoking. When our son was first diagnosed which was about 16 years ago, OCD was then a not well known disorder and was mortified when as parents we were left in the dark and not included in any discussions for treatment. Thankfully those days are long gone, but it has taken us many turbulent years of utter frustration to find a good therapist who was willing to acknowledge that the family also plays an important role in treatment and also needs to be well educated on how to assist effectively. It’s a team effort. I think, as you stated, professionals need to acknowledge the fact that as mums we do acquire a lot of knowledge with the complexities of the disorder and this information is quite often vital for adequate treatment. I know from experience now, that covering up compulsions and actually opening up to another person is such a fear with those suffering from OCD. I think it’s such a fine line we tread sometimes, because as a parent you want to do everything possible and support wherever you can, but at the same time you also have to know when to take a step back and allow those suffering to want to help themselves.

    • Thank you so much for sharing, Janis, and I’m sorry you were treated so poorly during such a difficult time for your family. Everything you say makes perfect sense; I sometimes wonder why it is so hard for some therapists to understand the importance of family involvement. Thankfully, as you say, we are moving in the right direction. I hope your son is doing well, and I appreciate your comments.

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