I can remember the first time I realized something wasn’t right. I couldn’t have been any older than seven or eight. I couldn’t sleep, and I was panicking and seething with guilt, though I don’t remember why.
What I do remember is that I’d gotten into a habit of holding my breath and counting when I felt stressed like this. More specifically, I’d hold my breath and count to ten. Sometimes it would help for a moment, until the anxiety started to pummel me again, my thoughts racing like a runaway train.
I’d repeat the process, then, until I fell asleep or couldn’t hold my breath anymore.
1… 2… 3… 4… 5…
6… 7… 8… 9… 10.
(I always loved the number five and multiples of five.)
I remember how it struck me that, no matter how many sets of ten that I cycled through, it never seemed to truly help me. And I wondered why my efforts were failing. Take deep breaths, right? That’s what they said.
I didn’t understand my emotions, because my emotions didn’t behave the way I was told they would.
It wasn’t necessarily a surprise, then, when I was nine and planning the details of my funeral like I was assembling a grocery list (I distinctly remember wanting my stuffed animals to be in my casket, until I later thought it punishingly unfair to bury them with me, as I explained in my diary).
It wasn’t a surprise that when I was ten, I was so jarred by the attacks on 9/11 that I started reciting the pledge of allegiance every time it was 9:11 PM, just in case, to make sure that nothing bad would happen.
And it wasn’t a surprise, either, when I was thirteen and contemplating suicide. It wasn’t a surprise anymore, because I knew from a young age that my emotions had always had a mind of their own, one that I was helpless in the face of.
For as long as I could remember, my body — and my life, really — was just a vessel for some kind of unspeakable anxiety and, at times, depression. This has been a constant. And for something so constant, you’d think I would never question it.
But I’ve still spent the last month in a tailspin anyway, persistently worrying that I’ve invented all of this somehow.
Disbelief and invalidation were my first experiences when I shared my pain, and those first experiences have never left me. It’s a voice of doubt that I’ve internalized after years of practice, after plenty of time to rehearse and learn the role.
It was the well-meaning parent that said, “We all get sad sometimes.”
It was the so-called friend that said, “He’s just doing this for attention.”
It was the school counselor that looked at my self-inflicted wounds and said, “Oh, that’s not so bad.”
It was the uncaring psychiatrist that said, “If your grades are good, why are you here?”
It was the teacher that said, “You don’t seem depressed to me.”
That seed of doubt was planted long before I had any defenses against it.
When I first started sharing my pain, it was often followed by someone else’s doubts. Those doubts almost acted like an electric shock, training my brain to question myself whenever I was hurting. The outside world interrogated my reality often enough that I had eventually learned to do it myself.
My obsessive-compulsive disorder, of course, latched onto this persistent self-doubt like a parasite, thriving off of it.
I have OCD… or don’t I? What if it’s an excuse, a way to disguise my evil nature? What if it’s all fabricated? What if it’s a manipulative ploy, a way of harming the people I love by eliciting their concern? How would I know if I’m lying? What if it’s all unconscious? What if I don’t even realize it’s happening?
And then I’d desperately search for reassurance.
I’d repeatedly ask my friends and clinicians to tell me I wasn’t imagining it, I’d research my diagnoses to death, I’d take every quiz, I’d google every variation on “did I make up my mental illness.” And if you know a thing or two about OCD, you’d know that the compulsion to be reassured only makes the obsession worse.
I became obsessed with the idea that I might have some kind of factitious disorder, despite how little sense that really made.
This last week, I spent upwards of ten or more hours of my day, drowning in the fear that I could be unconsciously hurting other people, lying to them. That I was somehow dishonest. And because factitious disorders are largely unconscious, it would be impossible to prove the existence of something that, by nature, I wouldn’t be aware of.
In other words, it’s a total mindfuck.
I’ve often explained my OCD to people as being fixated on “the unicorn in the other room.” I can’t definitively prove there isn’t a unicorn in the other room, and the mountain of evidence to the contrary doesn’t offer total certainty. And for OCD, 99% certainty will never be enough; OCD thrives in the 1%.
OCD introduced an ethical dilemma that, at the time, felt very real to me: Every time I reached out for help, I questioned if it was an attempt to manipulate someone, or if it was “proof” that I only wanted attention.
The simple act of needing help became evidence of the very thing I feared most.
But the more I suffered, the more I desperately wanted to ask for help, fueling the anxiety. It got to the point where I was refusing to go to support groups, because I was afraid I would be “found out.”
That anxiety fed the compulsion to research (which is, in fact, a real compulsion), to repeatedly ask if friends believed I was ill or lying, or to ask my clinicians to remind me of my diagnoses (and some were totally unwilling to play this game, knowing it was a compulsion).
At one point, I was opening up my healthcare provider’s app dozens of times per day, just to look at my list of diagnoses in an attempt to self-soothe.
These mental compulsions, though subtle at first, started to escalate in frequency, until it eclipsed most, if not all of my day. I’m talking, thirty-texts-in-one-week-asking-my-friend-if-I-have-OCD kind of frequency (sorry about that, Chris). And the more I tried to stop thinking about it? The worse it got.
It took me far too long to recognize that these were behaviors stemming from OCD. Even now as I’m writing, there’s this compulsion to research just a little more, to take another OCD quiz (knowing that the results will always, always be the same), or to ask my partner for the millionth time, “Are you sure I have OCD?”
You know, just to be sure.
(And even now, there’s the fear that I’ll put this article out into the world, only to discover later that I’m not mentally ill at all. It’s not logical… but OCD isn’t logical, either.)
But given what I know about OCD, I’m probably not the only person that has been consumed by this fear.
And I’m definitely not the only mentally ill person to ever worry myself sick over whether or not I’m mentally ill enough, traumatized enough, suffering enough.
The very existence of this fear (which is so common, obviously to varying degrees) speaks to the kind of invalidating world we live in. Mentally ill people are practically groomed to gaslight themselves, and that kind of doubt doesn’t help or serve anyone.
So if you’re out there, maybe repeatedly googling “Am I making my mental illness up?” (like I have about five hundred times this week), I hope that this came up on your search results — and I’m glad that you’re here.
Because I’m going to say to you what I think is most important to hear right now:
No matter what you label your suffering, that pain is valid.
Mental illness or not, whatever framework you use to interpret or make sense of your pain… it’s still valid, and you deserve to be supported as you work through it.
If you are struggling, you deserve compassion and care. And as you struggle, you need to take care of yourself.
You have value. All people do. And you, just like anyone else, are worthy of happiness, health, and wholeness.
I’m giving you permission to create the circumstances needed for you to be well and thrive.
If that means asking for help, ask for help. No one should have to suffer alone, including you.
I can’t prove to myself that I do or don’t have OCD (or depression, C-PTSD, borderline, and whatever else ends up on my chart).
…And if you think about it, the nature of this whole “existence” thing is that there’s never complete certainty of anything — just hopefully enough certainty to get by.
My brain still isn’t satisfied with the quizzes, or the research, or the reminders from friends, or the diagnoses. I realize that now. The more I seek out the reassurance, the worse I feel.
And while I’m (mostly) okay right now, I might obsess about this all over again tomorrow, because that’s what this disorder does.
(Or maybe my mind will latch onto another fear, convincing me of some other way I might hurt someone or do something that I don’t actually want to do, inspiring the next great moral crisis for me to spend hours and hours consumed by. This is a very tedious, persistent disorder.)
So rather than resisting the doubt, I’m choosing to live with it. I’m choosing to do my very best to accept it — to accept doubt as one of the preconditions to being human in this very messy, confusing world.
I don’t know much for certain, but I do know this: I can take care of myself today. I can try my best to be kind to myself.
That’s what I’m going to do tonight. And I hope you will, too.
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Thank you. I frequently obsess “was my life experiences really that bad enough to be abuse?” Despite my therapist and my partner and my chosen sibling telling me a million times “yes, your family was and in some ways still are abusive. They abused you physically and emotionally.” how I wouldn’t doubt anyone else’s claim.
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I keep obsessing too “was it really bad enough to be complex trauma? Especially when I doubt my hazy memories and remember very little of anything?”
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I’ve had this exact thought! And I wrote about it here a little bit: https://letsqueerthingsup.com/2017/08/20/am-i-traumatized-enough-for-a-complex-ptsd-diagnosis/
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Thank you so much for your writing “s a permission slip — your trauma matters. And getting support for that pain you’ve been carrying is long overdue.”
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Actually you’re the first person to voice this in a place I easily saw it. I have had this exact thought myself. Because there are times when I feel okay “right now” and then I question everything. Thanks for speaking up on it.
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Really interesting post. V informative on mental illness and useful for me as a writer working on a novel with a character who has OCD. Thank you for sharing. You have a very engaging voice.
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Sam, you testify to the truth that one of the most damaging forms of (what to call it? “Invisible Trauma”?) most often unintentional abuse (intentional, in the case of Gas Lighting) is invalidation of pain, confusion, fear, etc.
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Reblogged this on cabbagesandkings524 and commented:
Sam and struggles with invalidation.
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Wait…other people do this too? Didn’t realize anyone else was also a frequent visitor to OCD tests and the DSM criteria. I’m hoping it’ll get better when I’m formally diagnosed, but I’m doubtful.
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Honestly, once I started getting therapy specific to OCD and was put on the right dose of Zoloft, this improved IMMENSELY for me. Hoping that you’ll find something that helps you too. ❤ Either way, you aren't alone!
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I’ve only heard about this from queer, especially trans people, about doubting their gender identity.
I’m so relieved, though also saddened, that I’m not the only one suffering from these thoughts.
I think the most damaging was when I was talking with a friend about our experiences with social anxiety and depression in a group chat, and my then close friend said that we’re just talking about it to get attention, and that he doesn’t talk about his depression (implying he was somehow better than us I think) even though it’s (supposedly) worse. He then described how he wanted to kill himself to prove his depression was worse. Which was pretty triggering to the both of us.
Society has done so much to silence and put down people with mental health disorders. And this silence makes it so isolating.
Thank you so much for sharing your experiences, when it’s so hard to find people confident and able enough to do so.
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Sam!! WOW. Wow wow wow. I do ALL of that!! You just saved my day, and really my life. You just wrote ME. The comfort and camaraderie I’m feeling today, now, is making me feel not alone, when last night after my 2nd or 3rd quiz I felt so empty and kinda hopeless. I had no idea even one other person did these things. I can’t tell you how many quizzes I’ve taken. I think I even took the “Are you a psychopath?” one. LOL
I have OCD, too. I don’t have it as bad as some, kind of OCD light, and it’s not my main diagnosis. But it’s still a pain in the ass. I’ve been diagnosed with Bipolar Disorder. And I’m just not totally sure that’s right. I’ve never had either a manic or hypomanic episode. I’ve got the depression piece for sure. And it is different than Major Depressive Disorder. I feel almost completely sure that I have bipolar depression because none of the SSRIs were doing anything. So I’m constantly taking bipolar quizzes and most of the answers are no. Then just recently I found online, doing the relentless researching I do, that there’s “soft bipolar”, where you have the depression but neither mania or hypomania.
But I haven’t brought that up with my doctor yet, so I feel I have no diagnosis really. So, I MUST be making this up, right? It is a mindfuck for sure. A “friend” told me she thinks I use my mental illness as a crutch. Ow. Could I really be doing that? Mindfuck. The main thing I wanted to reach out and tell you is that I do the exact same things you do. YES, it’s a total compulsion to look disorders up constantly. I’m online EVERY. NIGHT. I wasn’t even sure what I wanted to find or was looking for till I read your blog. Reassurance. “Yes you have this thing and that’s why you feel and think the way you do, and here’s how to fix it”. I want reassurance and a name for what I’m experiencing. If it has a name then it’s real and most importantly proves that it has nothing to do with my character or personality. These things are affected by my “thing”, but it it isn’t ME. I’m not just neurotic, or attention seeking, a drama queen, lazy, stupid, on and on. I’ve had the same fear that it was always attention seeking. I know that it wasn’t but I have that same fear, and it can seem very true at times. Speaking of which, I found this great site, can’t remember the name, but I’ll share with you the quote that really made me go YEEESSSSS!
“Thoughts are mistakenly seen as privileged, occupying a rarefied territory, immune to being affected by mood and feelings, and therefore representing some immutable truth.”
Because I think it, it’s real. That’s how it feels. And I’d say most if not all of it is untrue. The night I read that I was elated. It represents EXACTLY what I go through. It made me feel centered and good. But after a few days the feelings of contentment wore off. There’s a “rush” in finding someting like that. And I’m finding I want more and more. I tried last night and no luck. So I felt empty and disappointed. I don’t know if that rings true for you. The Universe sent me to this blog. I just happened upon it, and I found someone who not only does exactly what I do but wrote it perfectly. Thank you for helping me feel that I’m not alone. It will help me so much when I’m compulsively looking up disorders tonight LOL JUST kidding. Sort of. :))
Much love and thank you,
Lynn
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THIS RINGS SO TRUE FOR ME!!
Please keep looking around the blog at other things I’ve written about OCD — I was misdiagnosed as bipolar for soooo long, when it turned out that OCD was my main diagnosis! (I get into it here especially: https://letsqueerthingsup.com/2018/05/12/i-didnt-know-i-had-ocd-heres-why-the-stereotypes-are-so-harmful/)
Sending so much love! I’m so glad you found this article when you needed it! ❤ ❤
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This post happened at the exact right time. I’ll check out the article link you sent me.
Thank you!!! 💜💜💜
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I’ve been feeling this way recently (especially with the worrying of “is it just facticious disorder?”) and it’s a relief to see someone else who has felt the same. Keep being awesome, Sam!
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Thanks so much! This and the linked article about c-ptsd might have just saved my life, if only I am able to gather enough will and confidence to do something about this whole ordeal now…
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Wow I really was googling this and never expected to find such a blog. I was doubting myself similarly to what you have written. I’ve never thought I could have mental illness and I kept asking myself if i’m not making this up because i’m a selflish and lazy person and if it’s easier this way. If I could just stop feeling bad if I really wanted to. If I was just leading myself to being a bad person. I was considering seeking help about health anxiety, possible social anxiety, some general problems and something that seems like intrusive thoughts that I’m getting since some time but they have gotten worse, making me doubt myslef, but I was not sure if I needed this help and I found it difficult to ask/make a visit as I find it difficult to make any visit anywhere which seems kind of like a social anxiety to me. I just know it would be so hard to speak my thoughts. But i’m glad I’ve found this blog, really, thank you for writing this!
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I’m experiencing things right now. Currently in therapy, still waiting for my diagnosis, but I’m haunted by this really strong belief that I had somehow faked it all. That I had been faking my whole life just for attention. Prior to going into the therapy I’d tried to find answers online, reading up on whatever I could about mental health, and I remember the descriptions of Borderline resonating rather strongly with me, and now I’m 99.99% convinced that I’m faking everything, exaggerating all my symptoms in hopes of being diagnosed with the disorder. But why? I kept asking myself. Why would I, why would anyone want to be mentally ill at all? And all the voices in my head laughed and said, “Why, for attention, of course. So you could be labelled as a special snowflake, poor, poor Heather, always so miserable and in pain. So you can avoid real-life responsibilities. So you can avoid being an adult.” It’s a mixture of the voices of everyone who’d told me over the years that I’m being over-dramatic, that I need to grow up, that I need to snap out of it, that I’m attention-seeking, that I’m too sensitive…
And the worst part is: I agree with them. I’m seriously considering dropping out of therapy just to make these voices go away. They’re driving me crazy. I don’t know what to do. I hate myself.
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Heather, this sounds so, so much like what I went through — including the fact that I drove myself batty and wound up diagnosed as borderline, even though the criteria for BPD is vague and applies to PLENTY of people with other disorders. I empathize with what you’re saying so, so much. I still have days where I think, “No, I just read the criteria and now I’m mimicking it just to get a diagnosis.” Which is all to say… you just wrote a comment I easily could’ve written myself (minus, of course, the fact that my name is not Heather, haha). Sending you so, so much love. I have been there many times. Brains can be so cruel.
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There are so many things here that ring true for me. I feel like I’m being stupid, that I’m just trying to add some extra drama into my life. I was watching Crazy Ex-Girlfriend and last night, I saw the diagnosis episode – something just clicked. I had always seen an unnerving amount of myself in Rebecca, and now I know why.
But now I’m questioning myself. I put a spreadsheet together with the DSM 5 criteria in one column, and examples of each BPD behaviour in the column next to it. I have real-life examples of everything – the worst of it doesn’t happen to me now, because I’m in a more stable place (had some therapy for ‘depression’ a couple of years ago which helped), but they are behaviours I’ve shown consistently since I was a teenager. Then I made the mistake of calling my ex, who rarely if ever believes anything I tell her, and thinks I’m just fitting my examples to fit the criteria – so now, I’m doubting myself.
I have done every BPD quiz I can find, and every one of them tells me I’m likely to have it – but what if I’m self-selecting, choosing the right outcomes to get the answer I want? I have an appointment with a psychologist in the next couple of weeks but, as my ex helpfully pointed out, now I’m seeing everything through this ‘self-diagnosis’ of BPD, I’m likely to get a positive diagnosis anyway. I have researched this to death, and was so anxious at the thought of having this condition that I woke up in the middle of the night, and haven’t been back to sleep yet.
I honestly don’t know how to deal with this uncertainty. I can’t stop thinking about it. My ex’s reaction – though I shouldn’t have expected any other reaction from her – has made me feel both moronic and furious at the same time. I don’t know if I ever want to speak to her again, but of course I don’t want to lose her from my life. At least I know I’m not the only one who feels like this. I’m scared I’m making it all up. Maybe I am a high-functioning BPD person, or maybe I just like drama. Maybe my life is so dull and un-noteworthy that I need to feel ‘special’ or some bullshit. I just don’t know anymore.
Thanks for writing this. I wish none of us felt this way, but I’m glad I’m not the only one.
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…I literally could’ve written this comment myself, word for word. For what it’s worth, I didn’t have BPD. And yet I still go through cycles about obsessing myself into thinking I do! If the obsessing about BPD is causing you more distress than any of the so-called symptoms… that’s probably telling.
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Hah, you’re probably right 😉 I feel like there’s something there – depression + anxiety never did feel like the right diagnoses, which I had a few years ago.
Right now, the obsessing is definitely the worst problem I’m having. You could be on to something! I hope my upcoming therapy will at least clear something up for me…I feel like being able to label it will help me deal with it.
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Totally! The label was so important for me. It’s taken time, but things have become so much more manageable now that I better understand what my brain is doing. I’ve also learned that OCD is not well understood by folks who aren’t specialists in it, which is why it’s missed over and over again, even by otherwise awesome clinicians. Hang in there — you’re definitely not the only one stuck in the spiral!
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Sam, what you wrote about is exactly what I’m going through now. I was super depressed a couple of months ago, with the feelings of feeling down and everything. However, recently, I don’t feel down or anything, I feel normal, but there is a huge change in my grade. I went from a straight-A student from having a lot of Bs and Cs. During the time I was depressed, I sleep a lot, and this problem still exists. (My parents commented that I wanted to sleep all the time because I’m always up till 2, and this has nothing to do with depression.) Also, I just couldn’t focus and do my work since I had depression. I can’t get up, don’t want to do my homework (this is never a problem before, I like going to school in general), stayed home for several days because I just don’t want to get up. This is all symptoms of depression, however, since I don’t feel sad most of the time (like I used to a couple of months ago), I feel like everything is just I’m just lazy and I just don’t want to get stuff done. I feel like I made everything up. I have taken dozens of quizzes about depression, I feel like I don’t have depression right now and I’m just making everything up so that I can justify my laziness and use this condition to get unfair advantages in school. I feel like I just made everything up, maybe unconsciously and that I overrated everything when I take quizzes (since I know how to get a severe depression diagnosis) so that I will get a result saying that I have depression. I don’t feel sad or hopeless so I thought “Oh great, I am just making this up.” Then when I feel down sometimes I thought “Oh, you are unconsciously making this up so you can say that you have depression and use that to explain you laziness and everything.” I have never gotten a real diagnosis, I only get counseling from my school and that kinda stopped working. Recently, because I did not get up and go to school, and that now I don’t have the excuse of depression anymore along with the feeling of “I’m just being lazy” overwhelmed me. My parents kinda make my belief of “I’m making this up” even stronger by saying that “you don’t have depression, you are just being lazy” (just this morning again when I fail to get up). I really wanted an official label so I can say, hey, I’m not making this up, but I can’t get an official diagnostic till weeks later. I really don’t know if I have depression or not, and it is so hard for me to really give myself a break. I read through your post and cried almost all the way through, I’m a bit relieved when I noticed that others have the same doubt as I do. I’m just hoping that an official diagnostic will help me believe that I am struggling and that my parent’s word doesn’t make everything worse than now before I get that diagnoses.
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Thank you so much, especially for the bits in italics that reminded me that even if I don’t have any sort of formal diagnosis the struggle is still real. I’m really glad I found this post ❤
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Thank you for this. My brand of OCD latches onto moral themes and I have fallen down the rabbit hole of researching too many times to count.
Much Love.
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Wow. Thank you. I needed this right now. Reading this I felt like I wrote it (even multiples of 5 is my thing, too). But you were able to put my thoughts into cohesive words. So thank you, thank you, thank you! You made me feel sane tonight, if only for a brief moment.
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