Late Diagnosis

I’m 29 which I know isn’t always considered old but something I have been really struggling with is this feeling of relief of getting diagnosed and at the same time frustration of how it was undiagnosed for so long. And how glaring obvious it was. Or in my case written off as GAD. When deep down I knew it was something more. It felt like I did a lot of advocating for my symptoms but was never validated. I did talk therapy implemented all the skills but felt like a failure because my obsessions weren’t subsiding. Finding NOCD has been beyond validating. To have this online community of wonderful people who truly get it. And to be educated that obsessions that I thought were rare and oddly specific were common in OCD. As well as the other things I have ruminated on now I know also being OCD. I guess what I’m trying to put out there is if anyone has experienced or has advice on moving through frustrations and into just pushing through.

Username: peaks&valleys peaks&valleys

User type: OCD Conqueror

Date posted: 1y ago

I had a very similar situation! I was diagnosed last year when I was 28. I went to different therapists my whole life. Some made OCD much worse (one recommended I picture a stop sign to “stop the thoughts,” another recommended I smoke weed before bed to help my mind wind down 😂). I had a really good therapist who would literally give me CBT homework from an OCD workbook—but I was still told I was just anxious/depressed! It wasn’t until I hit rock bottom and I went searching for a new therapist that I came across someone who suggested I get evaluated for OCD. What helped me is grieving the lost time and missed opportunities from living with untreated OCD. Not regretting or ruminating, but actually acknowledging like, damn, that sucks. Looking back on certain memories where ocd made me do something embarrassing or cringey and offering myself some compassion because I was doing the best I could do with my skills at the time. Kimberly Quinlans podcast helped a lot with learning self compassion. Also, finding some humor at what happened can help. Since I felt like I had already lost so much time to untreated OCD, I felt very motivated to dive into ERP and learn about OCD. I realized how precious every day is and how I don’t want to let OCD decide how I want to spend my time. Support groups help too. You can meet other people who were recently diagnosed later in life. I think on average OCD is diagnosed 7 years after the onset of symptoms. Hearing others stories about late diagnosis helped me find compassion for my own story. I hope this helps!!! I’m so glad you found your way to a diagnosis and treatment even if it took a while.

Username: Ken!Ken!

Date posted: 1y ago

@Anonymous Thank you so much for this, being at a similar age too means a lot. Yes the making things worse is a relief to know now that it just was the missed diagnosis and not a lack of effort or trust in a therapist. I hit that rock bottom 6 months ago and also got evaluated. I think that self compassion and reflecting on those moments that now I know were directly related and not just “something wrong with”. Maybe making a list to heal that younger self. I love the humor aspect because at times even when realistically we know the thoughts may be unrealistic or ridiculous it can be helpful to laugh at it too. Thank you for the perspective of the preciousness of every moment now the present instead of past rumination. I will definitely hop on the support groups. 🖤

Username: MichelleVMichelleV

User type: OCD Conqueror

Date posted: 1y ago

I’m 32, and was diagnosed last year. So I can understand the relief but the frustration. I am sorry that you weren’t validated before. As the person above me suggested, allow yourself to grieve and feel frustrated, instead of only pushing through. Something wonderful that comes with ERP is the feeling of getting your life back from OCD. You will learn the tools you need, and you’ll discover new parts of yourself. I also suggest going to the NOCD support groups-a lot of people in there were diagnosed late in life, and it’s helpful to hear their stories. I wish you the best in your ERP journey ❤️

Username: pathpath

Date posted: 1y ago

I’m 57 and was diagnosed 5 years ago. I’ve done ERP the past 11 months and I’m so grateful finally having tools to deal with it.

Username: darnlinadarnlina

Date posted: 1y ago

Hey, I’m 29 as well 🥳 I was obsessive about my interests and highly secretive of them early on. Specifically, I loved psych and self-help books but mostly because I knew something was inherently different about me although I could mask it. So, although I knew I had OCD, I never told anyone because I also didn’t know I was Autistic and didn’t want to let people know how radically different I think and process things (now I have community there and no I’m not alone on that). I find that now I’m needing to acknowledge the true impact OCD has had on my life and has only gotten worse since I thought I needed to fit into a certain framework of my other diagnoses, my mirroring other people never stops it is a compulsion in itself and one of my interests. Now, I’m thinking I might also have OCPD but need to look more into that too. I don’t have answers but I tend to make things nihilistically funny in my head when I notice things going southbound. I don’t even know any more of what is good and not good and I think learning to sit still even in a fiery mess, often with a weighted blanket, makes me feel grounded. I’m surprised I didn’t get noticed earlier but I thought I could fix myself out of it so I wouldn’t require professional help later down the road. And so, alas, here I am.

Username: Ghostdog Ghostdog

User type: OCD Conqueror

Date posted: 1y ago

I found out when I was 49

Username: AnonymousAnonymous

Date posted: 1y ago

Absolutely agree! With the frustration and the validation. I was diagnosed at 38! I don’t have any tips but just wanted to let you know you’re not alone.

Username: ArabianhorseloverArabianhorse...

Date posted: 1y ago

Well, I was 62. I suspected I had it since 1986, but several therapists never caught it. It’s been hell.

Username: Ken!

Date posted: 1y ago

Newly Diagnosed

Hi friends, I have recently been diagnosed with OCD these past few weeks. It all can feel really all encompassing and overwhelming. And almost like I’m completely at the bottom of the mountain and still realizing so many things I have dealt with were actually OCD. Does anyone have any advice or things they wish they knew in the beginning of starting treatment? I appreciate you all and the community. 🖤😊

Username: Ellie4

Date posted: 50w ago

New diagnosis

How did others do after first getting diagnosed? Did the diagnosis cause you to spiral initially? It feels like all the symptoms have become so much worse since, maybe because I am noticing them and focusing on them. I have been stuck on looking back through my whole life but now through an OCD lens and it’s been incredibly overwhelming realizing how much OCD has impacted me my whole life. I had previously assumed all the symptoms were part of my having ADHD and Autism, but I am now realizing a lot of my struggling was actually OCD. I’m 45 and I was diagnosed with severe OCD a week ago. Tomorrow I start ERP and I’m quite anxious about it. I feel pretty unfixable at this point, but I’m trying to be hopeful. I have my doubts that I will be strong enough to do this.

Username: Knockonwood3

Date posted: 31w ago

Recently diagnosed and trying to find community ❤️‍🩹

Hello. This is my first post and it’s going to be a confession of sorts… I was recently diagnosed with OCD and it has been really clarifying, scary, and confusing to navigate alone. I am also going through a lot of changes in my personal life. I recently graduated college and I am currently healing from a very difficult break up with my partner of 4 years. I don’t handle uncertainty or change very well so this period of my life has been super stressful and uncomfortable. My recent diagnosis and break up have taught me a lot about myself. I first realized I might have OCD because my mental health and— what I now know to be compulsions— became so destructive to my physical and emotional wellbeing that I actually began googling questions about repetitive self mutilation. The first result was something about the link between OCD and self harm. There were some examples of what compulsive self mutilation can look like, and it strongly resembled the things I have struggled with my entire life. For me, self mutilation is the compulsion I struggle with most. At times it has been incredibly debilitating. From there, I became obsessed with reading into OCD (I find this pretty ironic and funny). The more I research about it the more it resembles the things I have struggled with for as long as I can remember. I realized that the overwhelming guilt, shame, and anxiety I feel constantly are not the consequences of being a bad person, but rather the symptoms of OCD. It feels super validating to learn that the inner turmoil I’ve struggled with my entire life is something other people experience and is actually treatable. I started working with a psychiatrist who specializes in OCD and ended up getting formally diagnosed with moderate to severe OCD. Since learning this, I am beginning to understand myself in an entirely new light. It has in no way been easy. I hit rock bottom and— just when I thought it couldn’t possibly get any worse — I hit an even lower rock bottom. I’m not saying this out of self pity or to try to fish for sympathy, I’m just hoping that I can make someone struggling with a recent diagnosis feel less alone. I have felt very alone in this journey even as I learn that many people struggle with similar things. I still have a lot of learning and growing to do, but I am actively seeking treatment and I’m doing what I can to manage my OCD. I’m really grateful for this platform and I am relieved to know that things can actually get better. I think the next step for me is to start ERP therapy, but right now that sounds really scary and exhausting. Even so, I’m quickly warming up to this form of treatment as I research about its effectiveness. Everyday I discover more ways my life has been impacted by OCD. It’s very painful to realize that the overwhelming shame I feel about my obsessions and compulsions has actually been the reason I’ve lived the first 23 years of my life undiagnosed. My diagnosis has also shed new light on my past relationship and has helped me sort through some of my emotions in this healing process. … To anybody who actually read this whole thing: thank you. If nobody read it then at least I got this off my chest. I would really appreciate any advice on navigating a recent diagnosis and seeking treatment.

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