D15 inpatient complex OCD

[Elpis]

Hi all, first post here and I’m looking for some information and support. My D15 was admitted to a psychiatric unit a year ago with a severe eating disorder initially brought on by anxiety after the first COVID lockdown. She has been in hospital and completely tube fed ever since. From Jan this year her state of mind deteriorated drastically - incessant SH, suicidal ideation etc -she was very closed off and by July ended up spending most days under constant restraint to try to stop her from hurting herself. Since then she has been moved from the ED unit to the PICU as ED unit couldn’t support her needs. It has since been established that the SH is because she has intrusive thoughts which make her believe if she doesn’t hurt herself then awful things will happen to her family. New diagnosis is complex OCD and they are trying to get meds right in the first instance (meanwhile she still spends all day trying to hurt herself). I am trying to figure out what this means long term - consultant said ‘the prognosis is not good’ so do we assume this means she will never fully recover? And if anyone else has been down this road I’d really appreciate any insights or advice you may be able to offer. Thanks for reading.

Edited September 4, 2021 by Elpis
Tyop

[snowbear]

Hi Elpis,

First off, my heart goes out to you over what sounds like a terribly sad and stressful situation. I think your daughter is in the best place for her just now and it's been a big breakthrough to discover the OCD cause behind her self-harming as she can now get treatment specifically tailored to that. So I'd say that despite the trauma of the last year for your family, the outlook is positive.

I once had a psychiatrist report conclude with 'the prognosis is very poor' and I admit at the time it took the wind out of my sails and left me feeling hopeless for a while. 30 years on I'm not fully recovered, but I've learned how to live a good life in spite of my OCD.

The psychiatrist who gave me a poor prognosis was doing so based on his knowledge at the time. With hindsight I believe he meant that he couldn't envisage me overthrowing the OCD completely or returning to a normal life without OCD. However, since then I have learned how to do exactly that from interacting with people here on the forum, educating myself on OCD, learning more about CBT, practising mindfulness, and from the experts learning more about my specific kind of OCD and how to treat it. New research is coming out all the time which advances undeerstanding and improves the prognosis even for the most severe cases. I fully intend to overcome OCD completely at some point in the future, and I see no reason whatsoever why your daughter can't do the same no matter how bad things seem just now. And believe me I've been through some comparably bad times myself so I'm not making comforting platitudes when I say that!

My advice is to educate yourselves on OCD and CBT as much as you can starting now. When she's stabilized on the meds make sure you get a good CBT therapist. Set goals with the therapist and keep at it until those goals are met - don't be fobbed off with a few sessions or a 'course of therapy'. Therapy for OCD can take several 'courses' and really only starts to work when the sufferer understands how their thoughts, feelings and behaviour interact to either maintain or overcome the OCD.

STAY POSITIVE. This is the single most important bit of advice I can give you. Never give up hope that things can and will improve, however slow progress seems at times.

And remember OCD-UK is here for you and your daughter if you have further questions or need support on her journey to recovery.

 

[Elpis]

Thank you so much for this kind and thoughtful reply, snowbear. It means a lot that you have shared your story. I have been feeling pretty hopeless this past few days as it seems like she is in such a dark place - so it is so good to hear that you have managed to get the right help and are able to live well. I’ve spent the last year learning everything about eating disorders and this has felt like a bit of a curve ball so I wasn’t sure where to start with finding out more about OCD. I’m glad I’ve found this site and the forums - I’ll be sure to keep reading.