Hi everyone. I haven’t posted here in months, and honestly, so much has happened that I don’t even know where to begin…
• Introduction:
My name is Starlight Seeker Stellaria. I was diagnosed with Obsessive-Compulsive Disorder at 16 (I was showing first signs/symptoms at 15 and earlier) and over time I’ve come to understand just how much it has affected my everyday life. I’m still a minor, and one of the hardest parts of my situation is that I currently have NO access AT ALL to medical and mental health care. My parents don’t support me receiving the treatment I need, and I don’t have my own money or the independence to arrange it myself. I’ve repeatedly tried to explain to everyone how much I’m struggling, but getting consistent professional help has not been possible.
My plan for the future is to pursue intensive treatment and hospitalization when I turn 18, when I can make my own decisions and have the financial independence to arrange care. I want to be evaluated by specialists, receive intensive OCD treatment, and work on ERP regularly, ideally with daily structured support from professionals who understand severe OCD (especially Paranoia theme). I’ve even started keeping a record of my experiences in those years so I can explain everything when I finally have access to treatment.
• My main OCD themes and obsessions:
One of my biggest paranoia themes involves being watched or monitored. I experience intrusive fears about hidden cameras or microphones being placed in my belongings, accessories, makeup, clothes, and other personal items. I can logically recognize that these thoughts are OCD, but emotionally I struggle to tolerate the uncertainty.
This theme has affected things I genuinely enjoy. Wearing makeup, lashes, nails, bracelets, jewelry, and accessories can become extremely difficult expressing myself. Even my glasses, which I need in everyday life, have become a trigger at times. Something that should be an ordinary part of getting ready can turn into hours of anxiety and mental arguments.
I’ve also experienced fears about my phone, apps, online privacy, and the possibility of someone monitoring my activity. I know that these fears can be part of my OCD (and also signs of cyberphobia), but that doesn’t make the anxiety disappear.
Another major theme involves losing things. I can become extremely anxious about whether I’ve lost something, whether my backpack and bag is properly closed, or whether I’ve forgotten something somewhere. Or accidentally left something in the places I’ve been. I experience urges to check zippers, belongings, and places I’ve visited. I recently started taking proof pictures after leaving a place, or a spot I’ve stayed. Even after checking, I can struggle to trust my memory and feel compelled to check again. But this theme has been getting better after practicing ERP and I barely have it anymore.
• The mental compulsions:
One of the most exhausting parts is the constant mental reviewing. This is my main compulsion.
I replay conversations, memories, situations, and small details in an attempt to establish certainty. I question whether I remembered something correctly, whether someone said something, or whether I overlooked something.
For example, recently my grandmother gave me new pajamas. I became extremely distressed because I associated them with her hospital stay. Even after she repeatedly explained that she had never worn them and that they were clean, my OCD refused to accept her explanation. I started replaying memories of helping her pack for the hospital, trying to establish whether those particular pajamas had been there.
I knew what was happening, but I couldn’t stop the mental reviewing. I cried, felt overwhelmed, and struggled with the idea of wearing them. And overtime became extremely anxious that I had an episode and I cried uncontrollably the entire night until I’ve fell asleep out of exhaustion.
This is one of the things that makes OCD so exhausting: sometimes I understand the cycle perfectly, but that understanding doesn’t automatically make resisting the compulsions easy.
• ERP and my attempts to recover:
Despite everything, I’ve been trying to practise ERP daily with the resources available to me.
I’ve continued wearing my glasses and sometimes wearing accessories even when they trigger intrusive thoughts. I’ve tried resisting checking, allowing uncertainty to remain, and continuing ordinary activities instead of letting OCD decide everything.
I’ve also created my own OCD and ERP educational materials, including drawings, diagrams and notes about the OCD cycle, intrusive thoughts, compulsions, and exposure and response prevention. I have reminders around me to help me remember that OCD is a cycle and that thoughts aren’t instructions.
I’ve noticed some progress. Sometimes anxiety that previously lasted hours now lasts only minutes. Sometimes intrusive thoughts become background noise, and I can continue what I’m doing without engaging with them. I’ve even noticed that I occasionally forget what I was even obsessing over.
But progress hasn’t been linear. I’ve also experienced relapses and episodes where the anxiety becomes so intense that I struggle to function.
• The episodes and physical symptoms:
Some of my worst episodes have involved uncontrollable crying, sobbing, shaking, intense anxiety, headaches, chest tightness, racing heart, stomach pain, nausea, and feeling like I might vomit.
There have been nights when the distress became so overwhelming that I couldn’t do anything except cry. I’ve sometimes felt physically sick from the intensity of the anxiety. And it gotten so bad that sometimes I was even smashing my head against the wall for how unbearable was the noise in my head…
I’ve also struggled with sleep, including experiences I describe as paradoxical insomnia, where I feel conscious or mentally awake despite apparently having slept. I was even catching myself doing mental compulsion while asleep. Sleep deprivation and exhaustion have made difficult periods even harder.
During one particularly frightening night, when I was extremely distressed and exhausted, I briefly experienced something that looked like a shadow passing across my vision and heard a very faint, brief whisper-like sound. I was aware of my surroundings and knew I was in my bedroom, but the experience frightened me. I don’t know exactly what caused it, and I don’t want to diagnose myself based on that experience. But my OCD told me I was in a psychosis episode.
I’ve also had periods of physical illness, including diarrhea where I’ve literally cached myself going to the bathroom too often, headaches, nausea, and concerns about dehydration. I am trying to pay attention to my physical health rather than automatically assuming every physical symptom is OCD.
• The emotional side of all of this:
I also struggle with loneliness. I don’t currently feel that I have a reliable support system I can turn to whenever things become overwhelming.
Sometimes I feel like I’m carrying everything internally because I don’t have access to the support I need. I’ve tried explaining my OCD and how much it affects me, but some of those conversations have ended with me feeling misunderstood or shouted at…
It can be incredibly isolating to know that you’re struggling and still feel unable to access the treatment you need.
Sometimes I just sit there and remember how my life was before OCD… I miss being able to enjoy ordinary things without OCD interfering. I miss getting ready, wearing the things I like, expressing myself, enjoying my hobbies, and going about my day without constantly negotiating with intrusive thoughts.
I don’t want OCD to take away more of my life. (Or take away my life)
• Where I am now and what I hope for the future:
I’m still trying. Despite of everything, I’m practising ERP as carefully as I can with the resources I currently have. I’m documenting my symptoms, episodes, obsessions, compulsions, and exposures so that I can eventually give a specialist a detailed account of what I’ve experienced.
My goal when I turn 18 is to hospitalizing myself and seek intensive professional treatment, work with OCD specialists, and receive structured ERP regularly. I want to understand my symptoms properly and have the support I haven’t been able to access so far. Years waisted…
I know I cannot make up for the lack of treatment by simply forcing myself through increasingly difficult exposures. I want proper guidance and support when I can access it.
I’m posting because I would really appreciate hearing from people who understand severe OCD, (specifically Paranoia theme) especially people who have experienced intense mental reviewing, fears about being watched, monitored, spying, tracked, contamination-related uncertainty, losing-item obsessions, and overwhelming episodes.
If there are therapists, counselors, or people experienced with OCD in this community, I would especially appreciate thoughtful guidance about coping with severe symptoms when professional treatment isn’t currently accessible.
I don’t expect anyone to fix everything for me. I just want to feel less alone and learn how to keep moving forward with the resources I have right now.
Thank you for reading all of this.
• My questions:
1. When its been getting worse, what do to right now, any suggestions and reccomandations?
2. How to keep on taking care of myself till I’m 18?
3. What resources that are not medically I can use? (except for this app)
4. What coping mechanisms would help?
5. What to do when I’m in a severe OCD episode?
6. What ERP examples I can use that are not as triggering and do not cause secere anxiety
7. Is there a possibility to at least stop this loneliness, maybe find friends in there or something? I would love to spend time with people who understands and gets through the same battle as me!