This post is part one of a two-part series. Read the second part — How I Was Diagnosed With ADHD — here. I decided to write these posts because I receive a lot of questions about how I received my diagnoses. Since I was diagnosed with both OCD and ADHD in my 30s, there is a lot of background so these posts are LONG. In sharing my whole story, however, I hope to make even one reader feel less alone and to encourage them to get the help they need and deserve. I wish I had received these diagnoses and gotten help sooner.
Annnnnd breakthrough part THREE: my Autism Diagnosis.
Until I was diagnosed with Obsessive-Compulsive Disorder (OCD) in 2018, I never truly understood what it meant to have a “breakthrough” in therapy. At 31 years old, I’d been in and out of therapy my entire adult life, but this was my first time hearing a diagnosis other than Generalized Anxiety Disorder. When my therapist first brought it up, I stared at her for a few seconds in disbelief. OCD!? I thought. As I processed it, however, my disbelief very quickly turned to clarity: of course, I had OCD. It made so much sense.
Growing up, I struggled a lot with social anxiety. I was very shy, even around family members, and couldn’t order for myself in restaurants. I dreaded going to school and spent a lot of my elementary and middle school years either at the nurse’s office trying to convince her to send me home or spilling my heart out to a school social worker instead of attending math class. Avoidance was my middle name. If I could get out of something, I would. The anxiety I felt about being around my classmates was overwhelming at times.
Every night before bed, I had a list of things I had to say to myself before I could fall asleep. They were all related to terrible things that could happen to my family or me. Please don’t let me get kidnapped. Please don’t let anybody in my family get kidnapped. Please don’t let our house catch on fire. Please don’t let anyone murder me or my family, etc. Without fail, I said these things every night for as long as I can remember. If I didn’t, I couldn’t fall asleep.
My socks had to be on my feet just the right way before I could put on my shoes. I remember my parents taking them off and on so many times that they would often get frustrated with me. I was (and still am) very rigid when it came to rules and plans. Things had to be a certain way and couldn’t change or I’d get very upset. I grew up feeling like this was normal — that everyone did things and felt the same way I did, and I had one very strong reason to feel this way: my father had OCD, too.
Although he was never diagnosed, my father exhibited so many textbook symptoms of OCD, there was absolutely no denying it. He’d check that doors were locked so many times that he’d break doorknobs at work. He’d repeat himself under his breath a set number of times and had rituals he had to complete every single day. He avoided going places and couldn’t do many basic things for himself. He had an assigned seat on the couch and a routine that had to be followed or else. He was very rigid, inflexible, and lost his temper frequently. I always thought his actions were so unreasonable. I know now that he was mentally ill.
So when my therapist told me that I had OCD, I immediately thought of my father and everything fell into place. As I mentioned, I had been in therapy for years and not one other therapist had ever mentioned OCD, but this therapist spotted it right away.
Spotting My OCD
In September 2018, I started seeing a new therapist when my depression and anxiety became a little too much to handle on my own. I’d been off antidepressants for seven months and out of therapy for longer but some really stressful things had happened in my life that summer and I felt like I couldn’t cope. We had barely finished our intro sessions when I found out that my cat had fleas. It was such a mild infestation that in the weeks between finding out and getting rid of them for good, I only actually saw maybe three or four fleas around the house that we weren’t brushing out of her fur. Still, in my mind, they were everywhere. I felt like there was nothing I could do to escape them. Even when I wasn’t home, I could feel them crawling on me and was convinced I was spreading them to other people. I had to take a shower every night before bed and had nightmares about them being all over me. Just the week before I had been cuddling with my cat on the couch. Now I couldn’t go near her.
I used a flashlight to look for fleas multiple times a day. We vacuumed the house every night and I sprayed every surface with flea spray multiple times a day. I took all of our clothing to the dry cleaner. I read every single article I could find on getting rid of fleas over and over again. I reached out to multiple friends and family members for reassurances that never came, not because I didn’t trust my friends and family, but because my brain kept asking, “but what if they’re wrong?” That’s the thing about OCD — the more you fixate on a thought and do the compulsions to get rid of it, the worse it becomes. At first, I couldn’t even sit on my couch or rug. It took multiple sessions for my therapist to convince me to put a white blanket over the cushions so I could sit on the couch and easily spot fleas if there were any. I spent the last few months of 2018 completely exhausted, dealing with the worst anxiety I’d experienced in years.
Finally, after seeing my therapist two times a week for more than a month, we got the flea situation and my mental state under control. It took a while but I was eventually able to touch and cuddle with my cat again and sit on my couch without the blanket. While some people might think that anybody would react this way to a flea infestation, the fact is, this wasn’t the first time my OCD had flared up. I just never had a name for it before.
Before the flea situation, the last time I remember becoming so overwhelmed by my anxiety was 2014. At the beginning of the year, I became fixated on the idea that I had filled out a form incorrectly at the DMV and that the police were going to show up at my apartment at any minute to arrest me. The mistake I thought I made was a minor one that could have easily been corrected but at the time, there was nothing I could do to stop myself from panicking about it and no amount of reassurance or google searching could calm me down. It took an entire month to shift to my next worry.
The thing about OCD is that it’s never really about the content of the intrusive thought but about your brain getting stuck repeating it over and over until you act on a compulsion to try to get some relief. Because of this, OCD is kind of like Whac-A-Mole — you knock down one worry and another pops up immediately in its place.
Shortly after the DMV scare, I become terrified that if I continued going to CrossFit, I would definitely get Rhabdo — a dangerous condition that deteriorates your muscles, can result in kidney failure or death, and sometimes occurs in people who take on too much, too quickly during workouts like CrossFit. I had just started CrossFit when I stumbled across an article about Rhabdo, and the way my brain works is that if I read about a scary health condition or something bad happening to someone, I become convinced that I definitely have that condition or that something bad is going to happen to me, too. Regardless of how irrational it is, my brain latches on to it and repeats the same horrifying thought over and over. Sometimes when I’m fixated on an illness I even experience psychosomatic symptoms that, of course, make me even more sure I have whatever it is I’m worried about.
I spent days reading everything I could about Rhabdo, trying to find just one resource that would assure me that I’d be fine if I continued going to CrossFit. Of course, I never found one. I turned to Jeff for reassurance constantly and every time he told me that no, of course, I wasn’t going to die of this rare condition I had just read about on the internet, I got angry with him for not taking it more seriously. Finally, my anxiety was so overwhelming that I canceled my new CrossFit membership, and even though I was bummed about it, I told myself I was being safe and would have nothing to worry about anymore. Ha! Like my OCD wouldn’t just move on to the next thing.
When a thought keeps coming back even after you tell yourself that it’s not real, it gets harder and harder to believe that it’s not. You say to yourself, no, that’s ridiculous, this horrible thing isn’t going to happen, and then your brain says, But what if it does? There has to be a reason you keep coming back to it. Maybe check this one thing or avoid this other thing just to be safe and then you can move on. The thing about having OCD, though, is that it doesn’t let you move on, and the reason a thought keeps coming back regardless of how many times you check, or reassure yourself, or avoid the thing you’re worried about is that your brain literally gets stuck.
For as long as I can remember, I’ve had this fear that I or a loved one could get sick and die at any moment. Understandably, this fear became about a million times worse after both Jeff and I lost our fathers in 2011. Somewhere around the time of my DMV and Rhabdo concerns, my sister-in-law’s mother was diagnosed with cancer. She had gone to the doctor for a minor cold and was given only months to live. What I’ve learned about OCD is that it’s triggered in times of extreme stress. So after learning about my sister-in-law’s mother so close to my father’s death, my OCD bounced from one thing to the next for the rest of the year. When her mom died in July, I attended her funeral but couldn’t look at the casket because I believed doing so would cause someone else in my life to die.
Fixating on Health
Aside from the DMV worries at the beginning of 2014, most of my OCD manifested as extreme health anxiety. Shortly before my 27th birthday that March, my right leg started to hurt seemingly out of nowhere. I’d been very physically active for most of my 20s so when I suddenly couldn’t walk without pain, I became convinced that I had some mysterious illness and that I was likely going to die.
I’ve never actually counted but it’s safe to say that, in 2014, I went to the doctor way more than ‘normal’ people do. It took doctors from March to October to finally realize that the pain I was experiencing was coming from a suspected labral tear in my right hip that I would need surgery to fix. The seven months it took to get to that diagnosis were excruciating, not just because of the issue with my hip and the fact that I was in physical pain every single day, but because my mind was suffering as well.
There were times during those seven months where I went to the doctor two to three times in one week. I also went to physical therapy. Both offices were right across the street from where I worked so it was way too easy to book an appointment and walk over at lunchtime. Before the doctors realized it was my hip, the pain referred to multiple different areas of my body, which of course didn’t make my health anxiety any better. If I wasn’t at the doctor convincing her to send me for an ultrasound because I was convinced I had a blood clot in my leg, I was asking my physical therapist questions about random pains I was experiencing in my foot or calf. Each time I got worried about another ailment, I calmed myself down by telling myself I’d just go to the doctor to make sure I was safe but I found myself reassured for only the length of my visit and then feeling like she must have missed something. I’d research every symptom I ever experienced and convince myself that I was going to die. I’d go to sleep at night terrified that I wouldn’t wake up in the morning. I couldn’t listen or read any news that mentioned illness or death. If I overheard someone talking about how a loved one had passed away, it sent me into an immediate panic. I was absolutely miserable and terrified.
I feel like it’s important to note that I was in therapy at the time and my therapist knew about every single health fear. She constantly tried to talk me out of them by questioning how rational the fear was and trying to make me view my anxieties logically. Those methods never helped though. I’d feel better for a few hours and then immediately start worrying again. If she knew I was suffering from OCD at the time, she never told me. I think that my primary care doctor must have known as well. They had both talked to me several times about restarting antidepressants and I was dead set against it because 1) I thought they might kill me and 2) I hadn’t yet let go of the stigma around taking meds for mental illness. But I finally gave in one afternoon when I broke down crying while sitting in the hospital waiting room about to have my second ultrasound to find the blood clot I just knew was in my right leg (spoiler: there wasn’t one). I knew I needed help and I cried at the doctor’s office as she prescribed me Celexa for the second time in my life (the first was right before my father died in 2011, but more on my experience with antidepressants in another post).
After I started antidepressants, a lot of things fell into place. My doctor finally diagnosed my hip situation. I left a job that I’d been in for years but was too miserable to leave. I had my hip surgery and three months of PT and was able to walk without pain again. I found a job I loved. Jeff and I moved to Asheville and got engaged, and then married. After all that, I felt like my life was finally stable enough to get off of antidepressants. So, I did, very slowly. It took from November 2016 to February 2018 to wean off completely but I did it and was feeling really great for a while. Then the flea situation happened, and I was finally diagnosed with OCD.
Dealing With My Diagnosis
Since this post is already so long and is only supposed to be about how I received my diagnosis, I’ll stop here and save the one-and-a-half year timeline of first being diagnosed to deciding to start medication for a future post about my experience with antidepressants. I will say that, as I write this, my OCD is largely under control, and that’s kind of amazing considering my history with health anxiety and the fact that we’re in the middle of a global pandemic. It took the right combination of therapy, seeing a psychiatrist for the first time, and getting on the right meds but, as I said, that’s a story for another post. I just don’t want to leave you hanging without some hope.
One last very important thing to note: OCD is not a personality trait. I am not SO OCD. I have OCD. There is a huge difference and if people truly understood how debilitating this illness it is to live with, I think they’d think twice before claiming that they’re “so OCD” because they like an organized bookshelf. This is why I feel it’s important to talk about my experience - to dispel myths and misconceptions and to contribute to removing the stigma around OCD.
As always, thank you for reading!