Living with uncertainty: AMA with Mackenzie Nordone

Omg same! This is wild to see we all go through the same patterns

I talk about this in group all the time. I’m human, so there are still going to be times when I get pulled in and give in to a compulsion. And when I realize I have, I try to shift away from, “Ugh, why did I do that?” and into, “Okay, I did a compulsion. How can I help myself now?” Because the goal of ERP isn’t to never do another compulsion again. It’s to decrease them and get to a place where they aren’t controlling so much of our lives. I’m not going to catch it perfectly every time. Sometimes I realize what I’m doing right away, and sometimes it takes a little longer. For me, it’s about what I choose to do once I realize I’ve gotten pulled in.

I can definitely relate to OCD latching onto the things I care about most. And when relationships are something you value so deeply, OCD can find a LOT to question. I also think the idea of finding the “perfect soulmate” can get really tricky with OCD. No relationship is perfect, but OCD can have us constantly checking. “Do I feel enough? Is this right? Am I happy enough? Should I want to leave?” Even when things are going really well, OCD can find something to question. Feelings are going to change, relationships are going to have ups and downs, and none of us are going to show up perfectly all the time. The level of perfection and certainty OCD is asking for just doesn’t exist. For me, it comes back to my values. I can care deeply about my relationships without needing to constantly check how I feel or know with 100% certainty that I’m doing everything “right.”

That hot flash of panic is SO real when OCD gets triggered. One second you’re fine, and the next your brain is going, “Wait, did I do something wrong? Did I miss something?” and suddenly it feels like you need an answer immediately.
 And when the fear involves someone or something we love, accepting uncertainty can feel incredibly scary. OCD wants us to go back, replay what happened, check, and try to get to a place where we know for sure that everything is okay.
 But we can’t eliminate all risk or have complete certainty in life. A huge part of recovery is learning that we can feel that panic and uncertainty without having to figure it out every single time.

@Mackenzie - NOCD Team Member Do you have any tips you give your members for sitting with that discomfort and uncertainty? I am much better at practicing response prevention now, but since I deal with POCD, sometimes the fear and uncertainty is so intense it feels like sitting with it is taking me out of the moment just as much as doing a compulsion would.

@LOLAK This was such a common trigger that NOCD put out multiple articles and videos addressing it! You are not alone!

@LOLAK Yes! I think many OCD sufferers have clinged onto this case including me. You are NOT alone

You are definitely not alone. Sometimes we can be doing really well and then hear, see, or experience something that hits a fear just right and suddenly OCD gets really loud again. And when that happens, it can feel like all of our progress disappeared overnight. But recovery isn’t linear. Having a spike doesn’t erase the progress we’ve made or everything we’ve learned along the way. OCD can take almost anything and turn it into a reason to question, analyze, compare, and look for certainty. That’s why recovery isn’t about never being triggered again. It’s learning how to respond when we are.

@Pyroclasticfroyo I’ve often wondered if this is what they mean by dropping the rope sometimes idk but I feel ya!

I really understand this. When OCD has taken up so much space in your life for so long, it can feel really strange to start separating yourself from it. Like, wait…what’s OCD and what’s actually me? And I think we have to be careful because even trying to perfectly “figure out” who we are can become something OCD grabs onto. Something I’ve learned through recovery is that I don’t need to have myself completely figured out. I get to learn who I am by actually living my life. What I enjoy, what matters to me, what I value, what makes me laugh, what I want to spend my time doing. There can be something really scary about imagining life without OCD running so much of it, but there can also be so much hope in getting to discover more of yourself along the way. ❤️

@Mackenzie - NOCD Team Member Wow love this response and just overall view of living life with ocd! Thank u!

Hey, have you seen these I don't know what to call it webinars maybe?

Honestly, I think of "values" as "anything that's important to me." So for example: "I value spending time with my kids, so I'm gonna do that even though I have intrusive images about them." "I value empathy and giving people grace; therefore, instead of getting mad at my sister for not doing something correctly (thus throwing off my plans), I'm going to recognize that this was her first time and she didn't have much guidance." "I value music, so I'm going to listen to this song I like, even though my brain tells me that I'm lazy for doing so and tries to bully me into being productive."

I think there’s an important difference between exploring what matters to us and feeling like we have to “figure ourselves out” with 100% certainty. We can absolutely think about our values, what matters to us, and how we want to show up in our lives. The tricky part with OCD is when that turns into hours of analyzing, testing ourselves, or running through future scenarios because we need to KNOW exactly what we would think, feel, or do.
 Our values don’t have to be something we perfectly figure out in our heads. A lot of the time, we learn about them by living our lives and making choices that move us toward the things that matter to us, while still allowing some uncertainty to be there.

@Anonymous This is helpful. I latched on when I get mad at my mom as proof that I am a bad person. Instead i need to think of it differently

@Anonymous - Thank you for taking time out of your day to help me :) I really like your response- that knowing one broad value can help guide you in so many different directions

@Mackenzie - NOCD Team Member - Thank you Mackenzie :) I appreciate you sharing your knowledge. You've always been very helpful in my recovery journey

I actually like to think of it as “living with uncertainty” instead of “sitting with uncertainty.” For me, it’s really just allowing a question to be there without feeling like I have to answer it, while continuing on with my life. And mental compulsions are tricky because we can’t just stop thinking. Thoughts are going to happen. It’s more about noticing when we’ve shifted from having a thought to actively trying to figure it out, analyze it, replay it, or get certainty from it. Sometimes I catch myself right away, and sometimes I realize I’ve been doing it for 20 minutes. I’m human. The goal isn’t to perfectly control what happens in my head. It’s recognizing when I’ve gotten pulled into that cycle and shifting back into whatever is actually happening in my life.

I really understand this. There have been seasons of my life where it felt like one thing after another kept happening, and OCD got SO loud in the middle of all of it. It can be exhausting trying to navigate everything life throws at us while OCD is demanding so much of our attention at the same time. One of the biggest things I’ve learned is that I don’t have to wait for OCD to be quiet or for life to feel easy before I can live my life. I can have hard days, feel overwhelmed, have OCD get loud, and still continue showing up for the life in front of me. Recovery doesn’t mean life stops being hard or OCD never shows up again. Sometimes we get hit with a lot, and it can take time to find our footing again. That doesn’t erase the progress we’ve made. For me, living a full life with OCD has been learning that OCD can come along for the ride, but it doesn’t have to be the one driving. ❤️

Hi Ya'll! The full AMA conversation takes place in the comments below. Comment your questions, and I will answer as many as I can today at 9 AM PT / 11 AM CT / 12 PM ET

Hi Ya'll! The full AMA conversation takes place in the comments below. Comment your questions, and I will answer as many as I can today at 9 AM PT / 11 AM CT / 12 PM ET

This really is tricky, but knowing something is OCD and changing how we respond to it are two different things. We can completely understand what OCD is doing and still feel that pull to avoid the discomfort. That’s such a big part of ERP. It’s not about proving to ourselves that the fear is silly or that we shouldn’t feel anxious. It’s about learning that we can experience the discomfort and uncertainty without needing to escape it through compulsions. And that takes practice. Knowing it’s OCD is one thing. Learning a different response to it is another.

Hi! There is not a link to watch anything. I will be responding to as many questions as I can in this thread starting in about 15 minutes!

@Jacs 🕊️✨ I was not sure if there was not any advice on this.

This is such a hard part of OCD because a thought can feel SO real. And once OCD starts making us question our memory, it can quickly turn into, “But what if I did?” “What if I forgot?” “What if I’m remembering it wrong?” And then we can get stuck going back over everything in our heads, trying to remember perfectly or finally feel certain. But the level of certainty OCD wants from us doesn’t exist. There will always be another “what if.” For me, recovery has been learning that I can let the uncertainty and uncomfortable feelings be there without having to figure them out. It’s uncomfortable, absolutely. But we are capable of being uncomfortable.

@Soliel and neither do you ❤️‍🔥 🥰 this is a very caring thought and it is just a frustrating reality. I don’t know why this happens and sometimes i get all riled up that it’s the world that socialized me to be so scared (recent cornell news among all the other realities of being a girl and stories were told and things were taught/warned of)

@Soliel I guess I realized I never put a question but I think it’s because I just want this to go away I don’t want to always have a relationship built around this thought always being in the background but from what we r taught it’s not abt getting rid of it but idk how to be ok with a life like this ig is my question. And although I’m able to be around him I’m still attaching it to him and changing my behavior around him no matter how hard I try not to it’s automatic.

@playwithyourtrash It’s also trauma related to me so since erp hasn’t really “cured” it I’ve started trying ART (accelerated resolution therapy)…. Although I’d say erp helped more with the sensations and things so far then it has and more than I thought it had! I mean it’s kinda night n day already from how I used to respond before I knew this was ocd… but it’s still like a block in my relationship I feel like.

@Soliel you’re not done growing 🌞 and i’m so glad to hear you say it’s changed so much. what an awesome thing to celebrate and i’m sorry too, the frustration is also real. but who knows what can happen ✨🥳🌅

@playwithyourtrash Ty! You’re right and it’s good to stop and give credit where it’s due! Man to think what I used to do and go through when those thoughts would come up 😭 vs now 🥹. So much of that being bc of these support groups and learning that my thoughts don’t mean what I think they do!

@Soliel i know i’m proud of who i am and how i Be too ❤️‍🔥🥰

@playwithyourtrash Not allowing myself to be proud… 🤔 thanks for helping me see that! 😊

OCD can absolutely latch onto fears about other people too, especially the people we love and care about most. And I can understand why this feels so much harder when it attaches to your husband. There can be such a strong pull to figure out, “Is this OCD? Is it lying to me? Is this something I actually need to worry about?” Even telling ourselves, “OCD is lying to me,” can sometimes become another way of trying to feel certain or make the fear go away. We aren't always going to be able to know with 100% certainty whether every fear deserves our attention. And I think that's one of the hardest parts of OCD. We're learning that we can allow that uncertainty to exist without having to figure it all out.

@Mackenzie - NOCD Team Member Ty so much! Using responses like thank u for reminding me how important he is to me is much more helpful for things like that for sure!!! I love when u bring that reminder up, bc it allows me to kind detach it from myself & remember it’s attacking our values. I didnt realize telling myself in the moment it’s lying to me may be feeding that cycle too, creating more opportunities for the thought to come up! Im gonna try to just notice it when it comes up n gently remind myself to get back to the present, that’s neither good or bad just a reminder of whats important to me in life! Thank u! And thank u for taking the time to read all these! 🤯

Raw chicken is actually a trigger of mine too, so I really understand this. Something I come back to a lot with OCD is that there’s a healthy level of concern with things in life, and then there’s where OCD takes over. OCD will swear that if we just do one more compulsion, we’ll finally get the certainty we’re looking for. But we can’t eliminate all risk. It’s just not possible. There’s always going to be some uncertainty in life, and for me, a huge part of recovery has been learning to recognize when I’ve moved past healthy concern and OCD is asking me for more.

@Mackenzie - NOCD Team Member Thank you. This is helpful!

@S. L. - You are SO welcome!

I really relate to this, especially with upcoming travel. My brain can start trying to live through the trip before I’ve even left, thinking through everything that could happen and how I would handle it. A tool I use all the time is pulling myself back into the present moment and reminding myself, “If and when something happens, I’ll handle it when I get there.” I don’t need to mentally prepare for every possible scenario ahead of time. And that doesn’t mean the anxiety or those physical feelings immediately go away. Sometimes they’re still there while I’m working, being a mom, or doing whatever is actually in front of me. For me, it’s been learning that I can let those feelings be there without needing to solve the future first.

This is such a good example of how OCD can take something we really value and turn it into something we feel like we have to do perfectly. Relationships are a huge value of mine too, but being a good wife, friend, mom, etc. doesn’t mean I’m going to get it right 100% of the time. I’m human. I’m going to make mistakes, say the wrong thing sometimes, and have moments I wish I handled differently. For me, values are more about how I want to show up in my life, not a standard I have to perfectly live up to. There’s uncertainty in relationships just like there is in everything else, and I can care deeply about my relationships without needing certainty that I’m doing them “right.” ❤️

Mental compulsions can be SO tricky because they’re happening entirely in our heads, and sometimes it can feel impossible to tell where normal thinking ends and OCD takes over. Something that’s helped me is focusing less on “Is this my thought or an OCD thought?” and more on what I’m trying to get from the thinking. Am I just thinking about something, or am I going over and over it because I’m trying to get certainty, feel better, or finally “figure it out”? That urgency to keep going until something feels settled is something I’ve learned to pay attention to. And even then, I’m not going to recognize it perfectly every single time. Mental compulsions can be sneaky, and learning to recognize them takes practice.

@Mackenzie - NOCD Team Member Thanks thats a fantastic way to look at it.

@jkj767 Omg yes I get this! Idk if it’s good or not but I started putting my alarm on for no good reason 🤣 that omg panic heartbeat rush feeling would come in and now it’s less n less but still kinda there when it’s actually for work or something but idk if this is a good thing or bad lol

I can totally understand how exhausting it would be to constantly feel on edge waiting for the next notification. The thing with OCD is that literally anything can become a trigger. And sometimes it’s less about the notification itself and more about the uncertainty of what it might bring. That’s such a big part of ERP. Learning that the anxiety and uncertainty can be there without feeling like we have to immediately do something about it. We don’t know what’s coming, but if and when something happens, we’ll handle it when we get there. ❤️

@Soliel Don’t get me started on the alarms. My heart races thinking about that! I’ll have to set aside time and try this!

I can understand wanting it to fade faster, especially when it feels like OCD just keeps finding a new sensation to latch onto. But something that can get really tricky with sensorimotor OCD is that trying to make the sensation go away can keep us focused on it even more. We start noticing whether it’s still there, how much we’re noticing it, whether it’s getting better...and suddenly we’re giving it even more attention. It’s less about getting the sensation to disappear and more about learning that we can notice it without needing to do anything about it. And just like any other OCD theme, the treatment remains the same.

@Mackenzie - NOCD Team Member Is it ok to kinda lean into it? It seems to help me. Ill notice it’s there and kinda name it like ok I feel my heart racing and im sweaty and feel like I may faint, and just kinda feeling those feelings as I name it tend to help them dissipate slowly…. Not sure if that’s good or not but when I have panic attacks thats what I do, and then I start grounding myself if i do think I’m gonna pass out I get in a safe spot and name what I can see, smell, taste and Feel sometimes hear to bring myself back to the present n then the sensations are usually gone

😂 I’m going to let you sit with the uncertainty on the apologizing. But I REALLY understand the actual question. Contamination OCD was my ride or die for years, and I know what it feels like when your own home becomes the trigger and you just want to throw everything away and leave. We actually moved multiple times because of my OCD. But every time I tried to escape the contamination, OCD eventually found something else. My world just kept getting smaller. ERP helped me learn that I could be uncomfortable and uncertain in my own home without having to do everything OCD was telling me I needed to do. And that was a huge part of getting my life back. ❤️

I wouldn’t look at this as failing at ERP. The goal is progress, not perfection. You were in a situation that brought up a LOT of discomfort, you tried to allow it to be there, and at some point you got pulled into a compulsion. You’re human. I talk about this in group all the time. There are still times when I give in and do a compulsion too. When I realize it, I try not to turn that into another reason to beat myself up. I shift to, “Okay, I did a compulsion. How can I help myself now?” ERP isn’t about doing every exposure perfectly or never doing another compulsion. It’s about continuing to practice living with the discomfort and uncertainty without letting OCD dictate what we do.

Support groups are meant to be a space for connection, conversation, and shared lived experience. They aren’t therapy, and I’m not a therapist, so a lot of what I bring to them is my own experience of living with OCD. I spent a lot of years feeling incredibly alone in what I was going through, and one of the reasons I share so openly now is because I know how powerful it can be to hear someone say, “I’ve been there too.” I want people to feel less alone and more understood. Answering a question here is naturally going to be much shorter than a conversation in a support group, but both come from the same place.

@SF18 What a weird thing to say.

@SF18 I personally love when the support group leader brings in their personal stories! I’ve learned so much abt myself just from Mackenzie’s stories abt how it’s affected her life and how she handles it on the daily! I’m not always brave enough to share my struggles with everyone watching and listening but she shares things that I’ve experienced and gives me the space to feel comfortable to then share mine too so I find it very helpful when they share. I do feel everyone is different but also maybe learn from why is that bothering u?

@Soliel The why is because very few people get time to share their stories over the course of an hour and those people who share are generally the same people with repeated versions of their same stories.

@Lexi96 That is a matter of opinion.

@SF18 Yeah I think it’s hard bc everyone wants to share to make sure everyone can and aren’t being compulsive by sharing the same story in multiple groups. I’ve often wondered if they should suggest this may be seeking reassurance to those that mention I shared this in another group as they’re sharing again in the new group bc to me it prolly is but idk….

@Soliel There is no live link. It’s this thread that’s the live.

@S. L. Yes I’m confused too

@Anonymous She’s replying to our comments in real time now on here

@Lindy 88 @Lindy 88, initially I was wondering the same thing b/c I also missed it. Forgot to put this event in my planner. 🙄 Upon reading Mackenzie’s info about the session, it appeared to me the format was all via this thread and not something that was recorded. Although, perhaps there is a recording too? Idk 🤷🏻‍♀️ You will see on this text thread Q & A. Ok, hope this helps! 😊