Need help supporting my sister

[WalterWS]

Hello all!

I am a 23 year old man and my sister is a 20 year old woman suffering from severe OCD: she is unable to process information efficiently, has compulsive movements, sometimes struggles to formulate sentences, needs help eating and getting dressed, suffers physical pain, plus other hindrances on her daily life. She is on medication and sees a number of professionals from the NHS. The issue is that her OCD is getting worse despite the help she is receiving. In fact there has been a dramatic decline in her condition in the past 6 weeks, such that she is now fully reliant on my parents to help her through day to day life. Whereas before she was able to operate well in certain situations, such as work (she works for a catering company), people now are starting to pull her up and ask what is wrong, even in her workplace, as they can notice her in distress.

As a result of her worsening condition, she is not practicing what her therapist and physiologist are advising in order to manage her OCD. Due to confidentiality and my sister's refusal to grant consent to my parents to be involved with the therapist/psychologist, no progress is being made and my parents are left in the dark with regards to what is needed to help my sister.

What advice can people give me on how to tackle this issue? How can my parents become more involved in helping my sister in tandem with the professional help she receives?

Any help is really appreciated!

[MyOCD123]

Hi Walter,

Your sister sounds very lucky to have a brother and parents who care so much about her and her well-being. May I ask what kind of treatment she is receiving for her OCD, and what her obsessions and compulsions focus on? I feel I could be of better help if I knew what her OCD attacks the most. That being said, I hope she is receiving ERP and not just talk therapy. Without doing proper exposures and learning to re-train our brain it is very hard to achieve recovery. Essentially, your sisters brain is malfunctioning and sending off false alarm signals that she is in danger, when in reality she is not. This is a pretty scary way of living life and she’s very brave to be fighting this. Many of us who have OCD are so ashamed by our intrusive thoughts and compulsions that we tend to shut others out and do not want to share them in fear that we will be misunderstood. Maybe that is part of why your sister does not want your parents involved in her treatment? Some obsessions can be sexual or violent, and although this is not a reflection of who we are as people and what we want, it is still embarrassing to have to discuss. Maybe your parents can start out with limited involvement with her treatment and work from there. There are a lot of good books out there for people whose family members have OCD. John Hershfield is a great writer and has a book you can get online called “When A Family Member Has OCD”. OCD can be extremely isolating and your sister probably feels as though no one could comprehend what she’s going through - I know I’ve felt that way before. Maybe a support group would be a good outlet for her to see that she’s not alone and that there are other people who struggle with the same thing. I hope this helps some! I’ll be keeping your family in my prayers. 💖

[Wheeloffortune in reply to MyOCD123]

MyOCD you have said it perfectly!!

[Ginger61 in reply to MyOCD123]

Ditto! Well said.

[Selesnya]

Are all four of you living together? It sounds like you are, but I'm not really sure.

One of the best things to do to help your sister is to learn what her fears are and not offer her reassurance or enable her in helping to carry out her compulsions to deal with her obsessions. If she wants to get better she is going to have to want to do so and go through the uncomfortable challenges of facing her fears through ERP. One of the unfortunate parts of OCD is that it is really easy for family members to enable the OCD by buying into the obsessions and compulsions. In order to really work together as a team it is important that everyone in the household is working towards the same goal. To do so, you all really need to be involved in the treatment and understand what is best for your sister. If possible try to get everyone together with your sister's therapist and go over what is helpful or not helpful for her. If that is not possible, maybe you can find a local OCD support group or do some reading on your own to figure out what is accommodating behavior that can make the OCD worse.

On the unfortunate side, you really can't make your sister get better. You can try to do your part in learning more about OCD and help in any way that you can, but your sister really has to want to change her behavior. You can't do it for her. If she is really struggling it may be appropriate to look at a more intensive form of therapy such as an inpatient program or an intensive outpatient program. There are certainly other options besides traditional once a week therapy, and it may well be warranted to look at other possibilities if the current path isn't working.

I hope that you are able to get some support yourself in figuring out how to help your sister.

Maybe some of these would be helpful:

iocdf.org/expert-opinions/e...

beyondocd.org/information-f...

beyondocd.org/information-f...

[Wheeloffortune in reply to Selesnya]

I love and agree with this too!! I think an inpatient intensive therapy would be good since her ocd is severe(we all have felt at different times that it is severe). It HAS to be with trained ocd specialists that will do ERP. It is the only proven method. And for all of us that have ocd and have done it, it works. This is a lifelong disorder that can be managed. You are a wonderful brother!! Blessings to you🙏💖

[Hidden]

Hi Walter.....you sound like an amazing brother. Your sister seems a lot like my own 20 year old daughter. Her condition got to the point where she was no longer able to function "normally" where she couldn't get to school or to work. Honestly the thing that helped her the most was inpatient therapy. She received AMAZING help from McLean Hospitals OCDI program in Massachusetts. Like some of the other replies mentioned, she definitely needs a therapist with experience in ERP. God bless you.

[Karla12]

Hi WalterWS. I agree about the support group if u could find one that your parents can go to. It’s a very difficult illness to understand, even we don’t understand when we’re sufferimg with a bad episode. It would be helpful if she could talk to you about her fears but sometimes we feel ashamed of our thoughts. You sound very caring and maybe your sister might open up to you. Keep in touch and let us know how your sister is