OCD

[HP1]

Hi there,

We have a young adult family member (23) with severe OCD. I am wondering how other families manage things that the person obsesses over, which directly impact the family. How do you navigate drawing the line between support / accommodating / enabling?

This is just one example. Our person is terrified of COVID; the impact on the world, the impact on children, the fact it's not been around long enough to truly know the long term effects, the impact it would have on them if they caught it (they firmly believe they will die), the fact that the vast majority of people seemingly do not take it seriously anymore etc. 

This obsession has continued to escalate over the course of this year. They don't leave their room except to go to the bathroom. The rest of the family all work, study, have extra curricular activities and social events.  However every event triggers a massive spiral of stress, the belief that we are deliberately endangering them despite the fact that (at their request) we mask when out, we mask inside our own home, we have multiple air filters on all day and night, we leave windows open all day and night, we all do COVID tests weekly.  We all feel like hostages in our own home. I don't say that to take away from their distress.  I wouldn't wish the level of their distress on anyone and it breaks my heart to witness it.  Up until this year, we all had free reign to come and go as we please.  But as everything reached a peak this year, we are now completely stuck between trying to be supportive, but equally, in my opinion with the amount of accommodating we are doing, surely that is enabling and 'feeding' the OCD beliefs?

I guess the question I'm asking is how on earth do we navigate this?  They are medicated (still tweaking the right meds/amounts), they see a psychologist weekly. We have reached the point we have cancelled many functions because it is not worth the stress. However, there are some things we really need (and, honestly want to do, to help keep ourselves in good mental health).  How on earth do we tackle that, when the resultant spiral and melt down leads, every time, to "I can't do this, you can't do this to me, all the work I'm trying to do in therapy and you are just setting it all backwards every time you go out". It escalates extremely quickly, to extreme heights.

We have discussed at length the decision to go to hospital when it is really bad, however, the very fact that this worst obsession is COVID means that hospital is the last place they'd feel comfortable. And nor will they utilise walk in mental health services (again, out in public, COVID risk etc).

Thank you, apologies for a long post.

[AuntGlow]

Hello @HP1, 

Welcome and thank you so much for your post. I have lived experience of OCD, so I am going to answer this from that perspective, which I hope will be helpful! 🫶

Firstly, I have so much compassion for how incredibly challenging this must be for you... to feel like a hostage in your own home must feel so suffocating and overwhelming. I can hear just how hard you are trying to keep your family member safe and grounded, but when it comes to OCD, it can be so so tricky. On one hand, the compulsions and 'safety behaviours' will help to ground them in the moment, but then on the other hand, you are right - it will absolutely feed the belief that Covid is something to be feared. And with every compulsion, that belief is strengthened. 

I tend to seek a lot of reassurance with my OCD, but I do have some hygiene-related obsessions too. Something I have noticed is that these thoughts are much more intense when I am generally uncomfortable or overwhelmed. So, I think the key here is to really validate the underlying feeling of fear and to look at how you can work together to create inner safety. 

I can understand how intensely terrifying these thoughts must be for them and I can't even imagine how unsafe they would feel in their body when these thoughts arise. 

In my experience, the key contributing factors where OCD is concerned are: the inability to sit with doubt/the unknown and a lack of self-trust. So, creating space to sit with that doubt is paramount. Exposure and response prevention is really helpful in this regard. This is where a person will expose themselves (gradually) to the thing they fear, without engaging in their compulsions. It is SO hard, but so worthwhile. And I have noticed that where there is less discomfort, there are less intrusive thoughts.

Is this something that they have worked on with their therapist at all? 

As for yourself, I am wondering what supports you currently have? And what do you think you need most to feel more grounded and comfortable at home? For example, in an ideal world, what would you like to see change? 

I can imagine that setting loving boundaries would be really hard with your family member who is struggling so much to find regulation... but I do get the sense that boudaries could be really healing for you both. Considering their whole experience, what do you think would be a very small boundary you could set to begin with? 

Here to talk things out with you and more than happy to workshop some ideas. 💛

[NightFury]

I haven't shared this with anyone before but, I can relate to OCD experiences showing up around COVID. I'm only just sitting with the informal diagnosis of OCD, so I'm not an expert but in sitting with it, I've been able to see where and when it's come up for me and it explains a lot of the behaviours I would be really hard on myself for.

With COVID, I think it was triggered by all of the uncertainty, not necessarily fear of catching it or fear of the impact it could have on my family. The world around me had changed - I was teaching and how I taught was changing (we had to adjust to an online teaching environment), I  was living in an isolated community and couldn't see my family, and the world around me and people's values were changing (the whole shebang around toilet paper) for example. The unknown element, drove me to research. I wanted/needed to know everything I could know about COVID and the way it was impacting the world. I watched hours after hours of media footage and reports, read article after article and I became so absorbed in it that it was all that my brain had room for. I felt anxious, unsafe and out of control if I didn't do the research. 

I had enough awareness to eventually see the impact surrounding myself with all of that was having on my mental health and I was even losing hours of time doom scrolling and researching. So, I started to do a clean up. I left every single news page on Facebook, and social media, and I stopped watching the news. It was painful, it was hard, and it was something that had to happen gradually and something that took a lot of self-reminders and reinforcement. 

It's something that I still need to work at - because it come up again recently with a different news story and a different scenario, with a different trigger, but same compulsion - to research, to know everything there is to know about what was happening in and around the situation. 

I think...for me, not doing my compulsion actually feels "painful." I become so anxious that my stomach hurts and my heart races and I have been known to have meltdowns and panic attacks and be stuck in an anxiety storm for days. The compulsions are me seeking reassurance - for me around COVID, If I could know everything there was to know, then it would mitigate the unknown. 

I wonder whether you could start by setting some boundaries? Maybe accepting that it's okay for your family member to choose to wear a mask when outside of the home, but your boundary is that you choose not to do the same thing? Or maybe, you can leave your window open in your bedroom but the boundary is that if you're not in the room (a family room) at the time, we will close the window? I don't know, just some examples maybe? Maybe you could work together to create some agreed upon boundaries? Try to approach the conversation from how you are feeling regarding the situation and validate that you understand how our family member is feeling as well, stay regulated and help them co-regulate from you. 

Not sure any of that is helpful...

@HP1 @AuntGlow 

[AuntGlow]

This is a beautiful reply and very helpful @NightFury 💛

I can very much relate to this sentence: "I think...for me, not doing my compulsion actually feels "painful." I become so anxious that my stomach hurts and my heart races and I have been known to have meltdowns and panic attacks and be stuck in an anxiety storm for days."

I can imagine your family member might feel the same? @HP1 

I really like @NightFury's idea of setting some mutual boundaries where you're both feeling heard and supported in your needs. 🥰

[HP1]

Thank you @AuntGlow so much for your very thoughtful and helpful response. I really appreciate it. Boundaries are something I have lost all ability to set. I completely agree with you, they are necessary, but I honestly don't even know how to put some in place when it comes to the many OCD issues. When I talk to my psychologist about the lengths we are going to, she thinks it is too far and not necessarily helpful. Another family member sees a psychologist who also thinks the measures we take to support our OCD family member are not necessarily helpful.  When I've been able to join OCD family member's psychology sessions, the psychologist gives me the impression that these measures that we are being asked (ie told) to take are valid and necessary to try and make the family member feel as safe as possible to enable them to do their exposure therapy. I think they have an excellent psychologist, however, I'm not sure the psychologist has been given the full story of just how much we are all doing.

What would I like? I would like to not have to mask in public, I would like to not have to mask at home, I would prefer to only test for COVID if any of us felt unwell, I'm fine leaving windows open and using air filters. For me, the biggest issue is the masking. The thing is, they're not just worried about their health, they are also worried about our health. And the fact that COVID is not going to go away, makes them feel like for this particular obsession, they are never going to 'get over it'.

There is a huge amount of reassurance seeking (for lots of the different obsessions). And, yes, sooooo much of it comes down to lack of control, uncertainty and not trusting that they'll be able to cope with a situation.

It feels like there are just so many obsessions, in so many areas, that they'll never be able to find a way through it all 😔

[HP1]

Thank you so much @NightFury, I appreciate your openness and suggestions.  There is a lot of overlap with your experience and my family member's. There's COVID, environmental issues, animal abuse, war, (bad) world leaders. Obsessive amounts of research into all of these worrisome areas, they've done sooo much research! And this is just one area of obsession (there's relationship OCD and loads of others). I know they have been cutting off their own access to platforms that fuel the worries, so that's good.

I honestly have no idea how to even set boundaries with them anymore. I've been able to be included in some of their psychology sessions, but we've not reached the point of being able to even start talking about boundaries. I will try again though as I think having the psychologist there is a good facilitator/mediator.

Again, thank you for your message.

[AuntGlow]

Hello @HP1 💛

Gosh, this sounds so, so tough. I understand what it would be like for both yourself and for them... I do feel that it may be unhelpful in some ways too. 😣

I completely get why this would feel so big and terrifying for them to consider - OCD attacks not only what we fear, but also what we value and care about. And it sounds like this lovely human cares about your wellbeing deeply. 

Have you shared how this is impacting you? 

ERP really will help with all of this... do you know what their trajectory looks like with this practice?

I can only imagine how painful this would be to witness, and how much you wish they were able to find more inner trust/grounding. 

I am wondering, when do you notice they are the most regulated? 

[HP1]

Thank you @AuntGlow, it is very rare that they are fully regulated for any more than half an hour or so at a time. And that is when their partner is here (they've been here full time for the past five weeks), but even then, they'll reach out to me via phone, text or in person conversation to help regulate themselves. I described it to someone the other day as each day for me and the OCD family member is like those scenes in a movie where there is a negotiator helping someone to come inside from a very high building. Those scenes normally last about 3 minutes in a movie.  In our home, I have these kinds of down-regulating conversations  anywhere from 5-15 times a day, ranging from a couple of minutes to 30 minutes to 4 hours at a time.  

Today another family member is wanting to go out on a date this evening and do the normal things a young person does. The OCD family member feels this is a huge betrayal of their safety because when the person goes out, they will not be masking. Although they will mask when they come back into the house, there is an air filter in both their bedrooms and all possible precautions are being taken inside the house.  

When I talk to the person with OCD about how we are feeling, they see it as "while I'm trying to just get through each day, you are all complaining about doing one simple thing, masking in public".  They feel that we are being utterly selfish and completely stupid, because, in reality COVID is real and it is dangerous. And we are not taking responsibility for our own health (or that of the community) seriously. No matter how I try and explain how we are all feeling (ie hostages in our home, how to balance supporting their needs vs what is feeding the OCD) it always just comes down to them feeling that we are not doing enough. The tricky thing is, the person makes many, many valid points. Yet at the same time, at the end of the day, if we choose to take the risk of not masking, that is our choice to make. However, the OCD person then feels we are directly and deliberately endangering and exposing them and other members of the community.  

We do have many good, in depth and worthwhile chats and when they are regulated they are able to explain their position and feelings very well.  But it is extremely rare for me or any of us to be able to put our point of view across because in their view we are either flat out wrong (factually), we are being ignorant and stupid or we are choosing to put them at risk which they also interpret as us choosing social activities over our relationship with them and their good health (and risking our own health). However, for us, we all need our social activities in order to keep our mental health in order, to try and support them. It is all a very big, ugly vicious circle with no end or resolution in sight.

Sorry, that's a very long winded answer. But it's been a loooong few days again (also while they're adjusting to new medication). I don't know anymore whether I'm being unreasonable or if I'm being completely controlled or if in reality there just are lots of good points being raised but I still want to choose to live my life the way I want to, but also trying to support them.  

For now, we will try and get through the rest of the day.

[AuntGlow]

Hello @HP1, 

So sorry for my delay, I have been playing catch-up!

Oh wow, my heart really goes out to you. You're painting a really clear picture for me, which is very helpful. And I can see how taxing this has been for you all. 

I am curious to know how the date went and how your family member managed their feelings around this in the end?

It must feel really vulnerable being on the receiving end of this too. 😔 Because it sounds like you're actually acting in a very selfless way, trying to ensure their comfort and safety is intact.

Yes, how you are feeling is 100% valid and of course you need your social and connected time. 

It sounds like we need to find a way to help this person see that you can care about them and their needs, but also have to do the same for yourself... 

Sometimes my requests can be unreasonable when I am dysregulated, and my partner will sometimes tell me 'no'... and I think, for me, it's about allowing that feeling to be there and to experience some kind of emotional closeness with the 'no'. 

How have things been overall this week? And how is their medication settling?

Also, I think their feelings and fears come from a real place and are valid, but it's absolutely not fair for you to be controlled in this way. You deserve peace just as much as they do. I think there just needs to be more exploration of ways to meet in the middle? 💛

[HP1]

Thank you @AuntGlow 

Well, the weekend went to the dogs, it was awful. The date on Friday night and then Saturday night got cancelled because the OCD family member was beside themselves saying that "I was there for you when you needed me and now you're not being here for me when I need you. You are prioritising a hook up over me."  Due to the guilt and trauma this triggered in the other family member, they cancelled and stayed home all weekend, pretty much alone in their room instead of being out with friends and meeting people. (I might add, this person survived a debilitating illness earlier this year and they fought with every ounce of their being to regain mobility and freedom.  Now their freedom is being taken away for a second time this year).

I broke. By late Friday night, I absolutely collapsed in a heaving, sobbing, heap and was not able to get out of bed until 5pm the following day with my mental state the lowest (like badly low) it's ever been.  I'm back on track now, but yes, the weekend was terrible.

Since the weekend, it's been an ok week though.  No major episodes, but still, so many conversations that go around in circles. I think they think by saying the same things for long enough we are all going to 'see the light' and do exactly as they say, forevermore. 

I met with the person's psychologist this week (thankfully I was granted permission to do this from the person suffering) and, as expected, they did not know things had reached this extreme level and acknowledged that it is absolutely unreasonable, unacceptable, not sustainable and certainly not part of their discussed exposure therapy plan.  We have discussed a plan of how to get things back on track with re-establishing very firm boundaries. Which, in all reality is probably going to tip the person over into an explosive/terrified episode and in all likelihood will result in a trip to hospital (which is the place they're most scared of).  But we are out of options.  The way I view it, all these measures are just feeding the OCD and they know full well that the adults of the house have lost all control and their OCD is being allowed to set all the rules.  If they feel out of control and they know the adults of the house have also lost control, then how can they feel safe?

For now, our job is to figure out when we will have the conversation to let them know that, like a band-aid, things are going back to normal, no more indulging in the over the top COVID safety measures and many many other things that are being done at home (with the psychologists agreement that that is the best way to handle this now).  I am scared and nervous. I 100% know it's the right thing to do for everyone involved. But I'm scared that they'll feel utterly rejected and abandoned. But ultimately, it is the best thing for them too, in order to get them back to a somewhat normal life.

The new medication is making them feel awful and they want to change it. I can't see that it's made any real difference, but one week in is too soon to say really.  This is being discussed with the GP and psychiatrist at the moment. Another check in next week, if we're not in hospital by then I guess.

This person no longer even hears the word 'no' from us. We have honestly just reached the point everyone caves to every single thing because it is so unbearable otherwise.  It's like living in an emotionally abusive relationship, even though to a degree, they can't help it (sadly, I do think there is some degree that they know what they're doing and getting away with).

Thanks for checking in @AuntGlow