My Journey with Health & Somatic OCD—Ask Me Anything!

Hi Eri! Health OCD can absolutely latch onto other people too, not just ourselves. Especially with people or pets we love the most. That sounds so terrifying to be worried about your children's health, because of course you want them to be safe and well! My advice honestly for this is to learn more about how OCD works and look into ERP therapy for OCD. In my own experience, no amount of reassurance from doctor's helped at all. Maybe for a moment, but the fears always come back. The underlying problem that needed to be addressed was OCD, and finally doing that through ERP therapy and psychoeducation about OCD has brought immense relief and coping strategies.

A key learning of mine for overcoming health & somatic OCD has been discovering that people who experience these things often have a hyperawareness to their bodies that others don't have. That funny feeling in your leg? Most people barely notice it. With OCD, you hone in on it and the volume goes up to 11. So understanding the differences there compared to "neurotypical" people helps me to better identify when OCD is doing it's thing so I can use my ERP tools. Another key learning would be really similar to you... simply sitting with the discomfort. Recognizing that yes, something feels weird in my body right now. I'm terrified it could mean I'm in danger from a catastrophic health condition. That's an uncomfortable thought... and just letting it be uncomfortable without trying to fix it or rationalize it or reassure myself. SO hard to do sometimes and it has taken a lot of practice, but learning this skill has brought so much relief. I agree with what you said, when you try to fight it or battle it, that just makes it worse.

@Philipp2024 I have the same fear as you did. It is really difficult for me to try and stop fighting the awareness though, because I feel like I am conceding to the disorder and therefore it will be true. I know this is the opposite of what is needed, but it’s like my brain can’t understand that. 😟

@Crook All I can say is to let you open the gates. Let every thought, every image or feeling be there. Whenever you find yourself ruminating that’s okay too, just do the “maybe, maybe not response”. Keep this going for a while and see the results. Also this exercise: use the loop tape function on this app and put a “beep” on it with like a one minute silence break in between. Whenever you hear the beep you bring your attention to the unwanted thought/feeling/image intentionally. Then until the next beep comes do response prevention via “maybe, maybe not”. Do this for 30 minutes every day. These two helped me tremendously.

@Philipp2024 Thanks for the advice. I definitely understand that I’m going to have to let the gates open. I see you mention to do this for a while and see the results. I always do this for a few hours, like a work day at most and then panic because the thoughts are still there. Is it normal for them to not have gone by then? Also, I have some physical compulsions, like avoidance and looking up OCD stuff online. Did you have similar? If so, did you have to stop those before opening the gates, or is opening the gates the first step?

@Crook You are asking me if it is normal if the thoughts are still there. From this I can tell that your goal is to get rid of the thoughts which means your current goal is a compulsion. For this reason I think it would be beneficial for you to shift your goal post to something else. This something else could be for instance be being able to live your life according to your interests and values without being diverted by OCD. I think it is really important to know your values and try to act them out on a daily basis (ACT). All the intrusive thoughts are allowed to be with you on the ride, but not allowed to divert you from your goals. I do have other compulsions like avoiding going to bed early to not have to be lying in bed with my intrusive thoughts not being able to fall asleep. From my understanding any compulsion is keeping our OCD alive, which means we should try to squash them all. In this case it could be setting a sleeping schedule to stop the staying up late compulsion. How I see it is if you are able to manage to reduce your compulsions to one less compulsion than you did yesterday you are already on the way of getting better. You don’t have to stop all them at once. Not opening the gates was a major compulsion for me, so that is kind of in the forefront, which doesn’t mean though that the others are not important too.

@Philipp2024 Yeah you are right, I am trying to get rid of the thoughts. I appreciate the advice you have given, as you know first hand, this stuff is not easy, like at all. I know I can get better because people like you are living proof. As you put it in the original post, it’s like being in a constant battle with awareness. I’ve been in this battle constantly for months. I’m just so tired. Thanks again, I will use your story as inspiration.

@Crook Even if I don’t like giving reassurance, let me do it here anyways. 1 1/2 years ago I was hooked on the feeling of saliva in my mouth for 24/7 including panic attacks each day. Today I maybe had 10 minutes of OCD (which is considered subclinical) and my last panic attack is maybe 1 year ago. Also my depression is waaaay down. So yes, improvement is possible. Easiest way to do it is to live your life, because it is the best response prevention I know.

@Philipp2024 I know reassurance is not good, but I’ve had such a bad day, I honestly needed to hear that. Thanks again. You are a warrior.

@Crook Those days suck. My favorite bad day antidote is a nice gym and sauna session, but everyone has their own. Hope you can find something to lift you up 🤞

@Philipp2024 - Phillip that is so awesome! I love how you put into perspective how minimal your OCD is now. And you brought up such great advice about how the goal is not to get rid of the thoughts, but to respond to them differently and still live a life according to your values even with the thoughts. THAT is was brings peace.

Hi Crook! Thank you for the kind words. I'm so happy to hear from you. It really is unfortunate how some themes and sub-types of OCD aren't talked about as much. It feels isolating. I'm glad I could help inspire you and show you that you are not alone in experiencing somatic OCD. I've also struggled specifically with hyper focusing on my breathing. How do I keep faith and belief in my recovery? Great question. I've had fears and doubts about that too, just like you have. OCD is nicknamed "the doubting disorder" for a reason, it can have us doubting if recovery and relief is even possible. It can make us feel scared to try to get better, in case we come to find that we can't. I remind myself of this whenever that fear comes up: that it's another OCD doubt and that ERP is an effective treatment, even in the face of those doubts. I keep going even when I'm uncertain. And I hear you, it's hard to make sense of moving past things that will always be there. As long as we're living, we're breathing. Something I've come to learn through treatment and through my work here at NOCD is that this actually applies to every theme of OCD. No matter what your OCD ~flavor~ is: somatic, relationships, existential, harm and more - they all involve thoughts or sensations that everyone experiences to some degree. Everyone breathes. Everyone has some type of relationship with another human. Everyone wonders about why we're here. Everyone gets weird intrusive thoughts that we might hurt someone. Most people can let those things go. But for people with OCD, those thoughts and sensations stick. We hyperfocus, and we fear the unknown of what these things could mean. People without OCD rarely focus on their breathing, and when they do it's fleeting. So the issue is not that we breathe, the problem ultimately is the OCD, and OCD is treatable! And yes, I definitely struggled with the compulsions of checking for feelings, sensations, and awareness. Sooo common with somatic OCD! It's so distressing. What helped me was using the tools I've learned in ERP therapy which is allowing the discomfort to be there without trying to monitor it, fight it, or do any checking compulsions. Easier said than done, I know, but the structured approach of ERP has helped me learn these skills in a gradual, manageable, and effective way. Non-engagement responses have been very helpful too. Learning more about OCD and how it works has been incredibly helpful too. It can be helpful to learn about somatic OCD specifically and also OCD in general, because ultimately all themes come down to the same thought process and cycle. This definitely wasn't too much! I'm so happy to chat about this. I know how hard it is to feel like people just don't GET what you are experiencing with somatic OCD. But I get it! You are not alone. Let me know if you have any more questions, I'm happy to chat.

@Andrea Wells Thank you so much for this! It feels good to be seen. I have been frustrated by my perceived lack of progress with this, because I’ve been in ERP for about 2.5 months and am still struggling. My mood has been better, but I’m still struggling with the checking for it and of course noticing just about all day. I have noticed some improvement but other parts of the day still make me think I’m struggling like day one. I guess I really need to work on cutting compulsions more.

@Crook You are very welcome! That’s amazing you’ve had some improvements with mood and OCD symptoms. Definitely sounds like progress has been made. Maybe not as much as you had hoped for, and that’s okay too. I try to remind myself that I’ve had untreated OCD a lot longer than I’ve had treatment for it. A huge turnaround doesn’t happen overnight. ERP is a skill that can take time to learn and there will be mistakes and frustration along the way. We’ll be hit with moments again that feel like we’re back to square one but the more we practice ERP, the further apart those moments can become. And yes working on cutting compulsions more will likely help a lot. I had to be really honest with myself that at first I was “half *ssing” ERP, and to go even further I had to recommit and fully commit and it definitely helped my progress go even further. You got this! We got this! 🫶

@Andrea Wells YES!!! I totally understand the half *ssing. Thank you for this advice. I feel like I was meant to talk to you! We do have this!

@Crook - Aww I love that! I'm so glad we were able to connect. I'm here to help.

ERP helped me a ton! Let me know if you have any questions about how ERP works or how to find a therapist who can do this treatment.

@Andrea Wells Yes I did erp but I m still stuck

@Monii - Aw I'm so sorry. I'm curious, where did you do ERP, and what was your experience like doing it? If you're comfortable sharing of course! I found that my first ERP therapist wasn't the best fit for me. While she was undoubtedly an OCD specialist and knew her stuff, we didn't quite click and I didn't make the progress I had hoped for. I requested a transfer to a different therapist and it helped a TON. The fresh perspective and different personality really re-invigorated things and I made a lot more progress.

@Andrea Wells I tried my self because I can’t afford therapy I seek some changes but I still worry about body sensations even after getting told by doctors nothing wrong I get thoughts that one day something will be wrong

@Monii - Oh Monii! That's really cool that you were willing to try ERP on your own and saw some changes. I love the resourcefulness. That's really cool. I understand that doubts and fears about your health still linger though, I know that's hard. I've been through soooo many medical appointments where doctors run tests and tell me everything is fine, but I still worry that something is wrong or could go wrong in the future. It's really scary. Having a professional to guide you through ERP can make a big difference, but I hear you when you say that you can't afford therapy right now. If you scroll down on this AMA, I responded to another member where I outlined some things that can make ERP therapy more accessible if cost is a concern. And remember that learning more about OCD and ERP online is free, and knowledge really is half the battle with overcoming OCD. I'll recommend a book to you too that some people have found helpful and is usually inexpensive to purchase online, it's called "Freedom from Obsessive Compulsive Disorder" by Jonathan Grayson.

Welcome and congrats on taking the step to start ERP! I know health anxiety OCD isn't talked about a ton, especially compared to some of the more stereotypical OCD themes, but you are definitely not alone. I get it. Lot's of people do. It sucks, it really does, to be so trapped by horrifying intrusive thoughts about your health the compulsions and safety seeking behaviors that come with them. It totally does feel automatic at times, you're right. The good news is you've taken a huge step towards starting the process to finding relief with ERP! It definitely is challenging, AND it's effective and will help you break free from the trap that is OCD. Rooting for you!!!

Hey JawnyD. My heart goes out to you, I am so sorry to hear how significantly OCD has affected you. I know firsthand how terrifying it is to always feel like you are going to die and that your life and safety is in danger. It's horrifying. I'm really sorry to hear you've experienced so many roadblocks to accessing care as well. I know that CBT therapy just doesn't help with these things unfortunately, and it can be so difficult to find OCD and ERP specialists that take insurance. I know NOCD is constantly working to be in network with more plans but unfortunately some of them still aren't covered. The silver lining is that even if you're out of network now, that could possibly change in the future! I have a couple bits of advice. First bit is to find out if you have any out of network coverage with your insurance. If you've already done this, disregard. But if you haven't, I will let you know that most plans will offer some level of reimbursement for care that you need to seek that is out of network. Sometimes it's like 40%, or sometimes it's as high as 90% - just depends on the plan. If you call the member services number for your plan, you can ask them what their reimbursement policy is. More specifically, you can also tell them NOCD's insurance CPT codes to find out the exact reimbursement amount (the codes are: 90791 for the first session, and 90837 for subsequent 60-minute sessions). Out of network reimbursement is actually how I first accessed care with an OCD specialist. It's a bit more legwork, but it was well worth it to find relief. If finances are a concern there is also a $95 a week payment plan for treatment at NOCD. This doesn't make anything cheaper (or more expensive), it's just smaller payments over time and interest free. And if this further helps things to be more accessible, keep in mind you can do the payment plan AND seek out of network reimbursement. It doesn't have to be one or the other - you can do both at once! I also encourage speaking to any friends or family for financial support too. If that's an option. And know that in research most people find significant relief from OCD symptoms around the 12 to 17 clinical hour mark, which is generally about 2 or 3 months into the process. So the bulk of the costs and investments are generally in the shorter term and not something that goes on forever. Self education can be a great tool too. Whether you have access to treatment or not, I always recommend simply learning more about OCD and how it works. There are many online resources, communities, books, podcasts, and more that can help with understanding OCD better. Knowledge is power here. I hope this helps give you some insight and options about what to do to find relief. Please know that you are not alone, and feel free to ask me any more questions if you'd like.

@JawnyD Hello! Try going to the international ocd foundation website to locate a therapist near you https://iocdf.org/find-help/ Just call around until you find someone that takes your insurance and practices ERP, ACT, and/or I-CBT. I literally just used this IOCDF website plus the website Psychology Today (and filtered by location, OCD, and insurance) and I eventually found a therapist for myself that took my insurance, and I’ve also found ocd specialists for some of my clients, too (I’m a social worker). I also couldn’t used NOCD, and payment plans weren’t an option because they were still too expensive. Additionally, I ended up finding some ERP groups online and near me by using the IOCDF website too. Good luck!!

Hi again JawnyD, I also wanted to share a book with you. A lot of people have found it very helpful at finding relief from OCD when they don't have access to formal treatment: Dr. Jonathan Grayson's book "Freedom from Obsessive Compulsive Disorder" has helped many manage their OCD symptoms, and is a great resource for those looking to try ERP-style therapy on their own. It is available at low prices from many online retailers. Additionally, here is a link to the International OCD Foundation’s list of support groups: https://iocdf.org/ocd-finding-help/supportgroups/. If you scroll down to the bottom of the page you will see a long list. Many of these are no cost.

Oh man, the urge to call 911 is so real sometimes! I have done that so many times or driven myself to the emergency room in a panic. I'm so sorry to hear you are feeling stuck in the cycle of health fears and compulsions right now. I know that sitting with the thoughts just feels unbearable or impossible in those moments. When things are really intense like that, I find that sometimes delaying compulsions is more achievable than completely resisting. If you are going to do a compulsion and can't resist in that moment, it's better to try and delay it than to not do anything different at all. I practice self kindness too reminding myself that recovery is not perfect or linear and I'm not going to have it all figured out right away. Exposures that I have done are writing down trigger words and reading them over, writing a worst case scenario, and also watching content like a youtube video that features the topic of what triggers me. Practicing my ERP tools and non engagement responses has helped a lot. Like "maybe this is a stroke and I'm in imminent danger. Maybe not. Guess we'll see!" and then moving forward with engaging in life even while feeling distressed has helped a lot. Last week I had a moment where I thought I was going to die and I was just like "maybe!" and then started making dinner. Healthy engagement in another activity (different from avoidance) helps me a lot in these moments.

Hi there! I'm so sorry to hear how you and your daughter are struggling. OCD really does affect the family, not just one person. That sounds really overwhelming and frustrating to be on the receiving end of her messages relaying her compulsions and fears. It can be hard to know the right thing to say or do in response. Usually our urge is to reassure too, but that actually makes OCD worse. You might find this article really helpful for your situation. It applies to adult children as well: https://www.treatmyocd.com/blog/how-to-lovingly-detach-from-our-childs-ocd-and-anxiety That's awesome that she is getting into therapy. Is she meeting with an OCD specialist or a general therapist?

@Andrea Wells Is it possible to receive treatment by phone or internet?

@Anonymous - Yes! It is. NOCD does all of their sessions through virtual Zoom calls (video is required to be on for every appointment).

@Anonymous THIS! Health/Somatic OCD is not what I have for the most part, but I can so relate to the struggle of balancing real responsibilities for myself with not engaging in compulsions. I will say that the more ERP you do, the better OCD gets, and the easier it is to tell what is real and what is OCD. I can say this much is true.

You're absolutely right. There is such a fine line! It can be tricky because obviously if there are legitimate health symptoms to be addressed, you want to do that. But if it's just OCD doing it's thing, then checking is a compulsion and we want to avoid that. The lines between these two things get so blurry and it can be confusing. For myself, I stay on top of my regular check ups (I have a chronic health condition so I get checked every few months) so I know logically if anything major is going on, it will be caught. For those moments in between where I'm scared I might be having a stroke or heart attack, I just.... embrace that uncertainty. Maybe I'll drop dead. Maybe I won't. Guess we'll find out.

@Anonymous I have the exact same questions.

@Snooshi I used to do the lab tests over and over and also ruminate over the exact levels being too high or low. I would google for literal hours about why they might possibly be off, and come to the worst conclusions. Finally, I talked with a doctor and realized that most people’s labs always have some levels that are high or low, and it can just mean you’re a little dehydrated, there’s a lab error, or there’s nothing at all (which is mostly the case). They usually want to retest to ensure there wasn’t a lab error. But I really empathize. The waiting game is the hardest. I would definitely go get repeat labs done if my doctor wants me to, and then talk about the feelings that come up with your therapist in the mean time, and work through that. If you don’t have a therapist, I would 100% recommend it too. It really helped with my health anxiety. Also just talking to the doctor about why levels are usually low or high. They’ve always made me realize there’s really nothing to worry about. Hang in there!

Hey Snooshi. That sounds so distressing. I've experienced a lot of fear and panic around lab tests and results too. There have been many times were something comes back elevated and even if it's not actually serious, it feels life threatening and I spiral. It feels like you are in danger and going to die and it's SO scary. Big virtual hug to you, I know it's terrifying. It's an interesting coincidence that I'm seeing this comment today. I had some routine bloodwork done just a couple hours ago. I was telling my friend how different of an experience it is now that I've come a long way in recovery from OCD. I used to be so panicked and scared waiting to get my blood drawn. And then I'd have sleepless nights refreshing my Labcorp portal over and over, waiting for the results to post because I was so eager to find out if I was in danger or not. It's so different now. I don't think much of it. Is the fear there? Sure, minimally. But now that I know more about how to tolerate that uncertainty of what my blood results might reveal, it's brought me peace and freedom from this.

@kayla. First and foremost from a therapist. If you don’t have access right now, buy a book. My favorite book is “Freedom from OCD” by Jonathan Grayson. It has very good ideas for ERP.

ERP is a specialized and evidence based treatment for OCD. Here is a helpful article about it: https://www.treatmyocd.com/what-is-ocd/what-is-erp A great place to start to get set up with ERP therapy is by booking a free 15 minute call with NOCD's intake team. They can answer your questions about ERP and check insurance and help find you a therapist. You can book a call here: https://home.treatmyocd.com/calendar

Hi there! Great to meet you. I'm glad I'm able to help show you that you are not alone. You've done the same for me by letting me know you get it too. Thank you for that. That really sucks you had a rough patch recently. I know how these flare ups can just knock you off your feet sometimes. I'm so glad to hear you have support and encouragement from your family and access to try medication too. I also appreciate you bringing up your worries about things actually getting better. This has been a big fear of mine at times. I know logically that OCD is highly treatable with a combination of medication and ERP, you can find a lot of relief and peace. I know that I have actually found lots of relief and peace. Those fears still come up "what if it never gets better? what if ERP won't work for me specifically? what if I'm the one person this evidence based treatment won't help? What if I'm doomed to suffer forever? What if I undo all my progress and OCD takes over again?" My therapist has helped me see that these fears and doubts are simply more OCD. This disorder can have you doubting if you can ever really get better and fight things. I work with this the same way I work with all my OCD doubts and fears: practicing my ERP tools and moving forward in the face of uncertainty.

@Tea and Honey I am not sure if you read my posts and the replies above, but I kind of spoke about this, but not exactly.

I have also had fears that I might develop another theme, or that a terrifying theme I've felt previously might come back. The fear that you might start focusing on breathing sounds like it's just OCD wearing a different hat. It's all OCD underneath. OCD can get really meta sometimes. I work with these fears the same way I work with any other OCD fear: ERP tools. Embracing the uncertainty and practicing non engagement responses.

Hey there! That's great that your daughter had some relief. I'm sorry to hear she's having a flare up again. Switching to another therapist who may be a better fit for her is a great idea. Transferring to a new therapist during my treatment journey really helped things for me too. If you contact NOCD's Member Advocates team, they can help you find a new therapist for your daughter. They can show you who is available and help you find someone who may be a better fit. You can contact the member advocates by either texting or calling (312) 766-6780, messaging them directly in the app, or emailing care@nocdhelp.com

You are so welcome! I'm so glad to hear that you finally have answers and access to treatment. I was diagnosed at age 31 after experiencing it most of my life. It explained so much and put things in perspective for me too. I don't know about you, but I was in and out of CBT therapy for most of my life, continuing to suffer and not knowing it was OCD. Getting that correct diagnosis and access to ERP made such a difference so quickly. I'm so thrilled to hear it's helping you too!

Thank you for reading. I am really honored that you found it inspiring and it gives you hope. I know hope can be the hardest thing to hold on to at times with OCD. But it's always there, even when we can't see it. Rooting for you as you work to break free from the OCD cycle. It CAN be done. It's not always going to be perfect, ERP is a skill that takes time to build like any other skill. The more you do it, the better you'll get. And there WILL be hiccups along the way and that is normal. Those hiccups also help you learn and get better. The most challenging parts of ERP for me are when the OCD gets LOUD when you are doing exposures. The doubt can feel so overwhelming and so strong, telling me that I AM in danger, and I MUST do something or do a compulsion. It really feels like the ultimate battle between a devil and angel on my shoulder, with the devil saying "do it, you're in danger, do the compulsion to stay safe!" and the angel saying "don't listen, it's a liar. This discomfort is how you break free". A lot of the times I push through these moments with pure blind faith. Reminding myself of the hell I've lived with OCD and honing in on my determination to break free and find peace. It's easier said than done sometimes, and I don't always get it perfectly. But reminding myself that OCD is an illogical liar can help me to push through those overwhelming moments. Also delaying compulsions rather than resisting completely helps a lot when it feels extra difficult to resist. It still throws a wrench in the OCD cycle and helps you break free if you delay, and sometimes it can feel more realistic and achievable to do it this way rather than resist all together.

It really can get better. What's your OCD journey been like so far?

Health OCD can affect you whether you have a physical health condition or not. It can also be treated regardless of if you have a physical health condition or not. ERP is proven to be very effective at reducing health OCD symptoms. So yes, you can overcome this anxiety and find relief from it.

Well, it helps for me to know that I still get my regular checkups for health to stay on top of if anything serious comes up. It helps me to know that if I need to wonder and guess and ruminate about if I'm having a serious or catastrophic health event, I'm probably not. Any time I've had a real emergency, I never had to question it. I just know. But I don't tell myself that in moments of doubt and fear, because leaning into that uncertainty is what helps you break free and know what's real and what's OCD. There's a fine line there because of course your health and safety is important and no want wants you to ignore legitimate physical health symptoms, AND your recovery from OCD is important too! ERP specialists are trained to help strike that balance of helping you to break from from the OCD trap while also keeping you safe.

Hi there! ERP is short for Exposure Response Prevention. This is the best treatment there is for OCD. It's evidence based and works to provide relief from all types of OCD.