19 year old sister with OCD

[Adamk]

Hi,

My 19 year old sister has been locked up in her room for the last 6 months and twice tried to take her life last year. 

She suffers from a combination of OCD, anxiety and depression and is currently incapacitated in the sense that she feels leaving her room will trigger OCD. My mum basically is her permanent carer, making her food and such. 

I talk to her now and again on the phone and she is adamant that no therapy can help her and that only she can be the solution to her problems. She thinks that by staying in her room the OCD will go away. It sounds to me like she hasn't given CBT or exposure therapies a proper chance as she hardly knew what they even are.

So, as you can see the situation is grave. So far we have just been living with this situation as if it's the new normal and we don't know how to progress, so I thought I'd post here.

My question is: what can I do as a brother to help her? What can we do as a family? 

It's easy to now imagine her as a narcissistic teenager who is lazy and just stays in her room doing nothing, unfortunately.

I should add: she was in a hospital for a month under close supervision and has gone through various therapies and cycles of antidepressants. But right now there is no progress on these fronts. After all, she is an adult so it's hard to force someone to take medication or seek therapy. We want to help, but she needs to want it.

Edited April 9, 2022 by Adamk
Additional info

[snowbear]

Hi Adam,

It's always difficult to watch a loved one suffer and not know how to help. When someone isn't ready to face therapy it's usually through fear that they won't be able to do what will be asked of them. Your role therefore can be to encourage her to seek help and reassure her that she'll cope better than she imagines. 

The other way of helping to shift this stalemate is to support her without colluding with her compulsions. This can be tricky. It takes resolve and understanding on the part of carers. The aim is to continue to support her (provide food, shelter and a listening ear) but not do things as her OCD dictates. For example people in your sister's situation may be allowing their OCD to dictate how the home is run - what way food is prepared, how shopping is handled, your parents 'having' to wash their hands when she feels they need to rather than just when they normally would...and so on. These are the sort of compulsions you can fight back against, by refusing to collude with OCD's demands. So food is prepared but done as your parents would normally do it and without any compulsions added.

In short, it's allowing her to do whatever compulsions she wants, but the family refuse to do any compulsions she asks/ demands be done on her behalf. The family return to living normally (as much as possible) and let her do more for herself if she's not happy with how it gets done in the normal way.

It's a balancing act between supporting her and not getting involved and as I said requires some understanding, resolve and tough love from the family.

The best place to start is for you and your parents to learn more about OCD so you're able to identify her compulsions and begin to separate out what's a resonable request for help from what is an OCD need (compulsion.)

We have several good videos from our conferences which you and your parents might like to watch.

https://www.ocduk.org/conference/conferences-across-the-uk/2021-virtual/family/what-family-and-friends-can-do-to-help/

https://www.ocduk.org/conference/conferences-across-the-uk/2020-virtual/conference-map/family/helping-family-member-with-ocd/

One thing is certain - the OCD will not go away by itself or by her staying in her room. I very much doubt she truly believes it will, but perhaps uses that as an excuse to stick with the safe and familiar and keep the 'threat' of therapy at bay. Perhaps you could get her to come onto the forums to chat to others about recovery and what it takes? The unknown is always more scary than dealing with actual demons when you face them.

[Adamk]

Thank you so much for the informative response. 

I've communicated this response with my family and it will be helpful. 

Many thanks,

Adam

 

[Adamk]

Hi,

Just thaught I'd follow up this thread.

Part of my sister's compulsions is that she does, as you say, demand things are done certain ways. For example, she often demands to have a vape pod. Any resistance to this demand will cause my sister to make us feel guilty. She might say that we are making the OCD worse, or even more disturbing things. Often this is all directed to my mum who feels quite unempowered.

As you say, it is tricky. We want to unite as a family in the correct response. We are trying to use negotiation tactics but I'm not sure this is the best option (I.e., saying you'll get this if you do this, or if you wait x amount of time). Might it be better to administer tough love and weather the storm of torrents that will come? The other option might be to say that we are sorry she feels that way but we will only give her the vape at a certain time that fits our schedule. That way we don't starve her of her compulsion, but don't reorganise our lives around it. 

 

It'd be great to hear any thoughts. 

 

A

[snowbear]

Hi Adam,

Sometimes in therapy people are asked to delay doing compulsions as a prelude to fully resisting / giving them up entirely so that fits with your negotiation tactic, although it does mean she's still getting her own way and still doing the same amount of compulsions overall. Good idea as a first step though.

8 hours ago, Adamk said:

The other option might be to say that we are sorry she feels that way but we will only give her the vape at a certain time that fits our schedule. That way we don't starve her of her compulsion, but don't reorganise our lives around it. 

This would be my preferred option and fits with the advice not to facilitate or become complicit in her compulsions.

8 hours ago, Adamk said:

She might say that we are making the OCD worse, or even more disturbing things. Often this is all directed to my mum who feels quite unempowered.

I think if you go the tough love route you'll get a LOT of this. So only do it if your mum feels supported and able to let the insults and accusations slide off her like water off a duck's back. A good response to these kind of outbursts is, 'I understand this is your illness talking and you don't really mean these things so I'm going to pretend I never heard that.'

Tough love won't make the OCD worse. However, your sister might make the OCD worse in response to it.

I'm making that distinction because you'll often hear OCD sufferers (me included in the past!) saying their family made things worse. But it's always a choice how we respond to anything in life. When you're deep in the claws of OCD it can feel like there's only one possible response (for the OCD to escalate, life to fall apart, hell to freeze over etc) but with the right input alongside the tough love the person will hopefully see that isn't their only option and will (even more hopefully) choose to go along with the changes willingly on the understanding it's for their own good.

By 'the right input' I simply mean a simple explanation that you're doing it for her benefit, and for the health of ALL family members. Keep reminding her that no matter how tough things are for her she's not the only one whose needs have to be considered. It might also help to remind her that things feel tough for because of how she's thinking at the present time. When her thinking returns to normal (when she recovers from OCD) she'll see things differently and understand why you're choosing to help her in this way. (She'll say you're hurting, not helping, and you point out that's because her thinking is distorted by her illness (OCD.) And so on.

I hope that gives you some ideas to be going on with. If you have further questions just ask.