It has taken me 20 years to share this story with such openness and to a potentially large audience. I suppose I finally realized I needed to take my own advice and break stigma by talking.
As a behavioral health therapist, it’s been a 15-year passion to reduce stigma by sharing personal stories. I encourage people to tell their story for two reasons: 1) to connect and understand their own experiences more deeply and 2) so others know they aren’t alone. Despite many years of working in the behavioral health field, talking openly about personal mental illness still isn’t a pervasive norm. Perhaps we struggle to find the “right time” to share this information with people we care about, or maybe we are still uncomfortable with our own story, or maybe we are afraid of what others may think and the possible unintended consequences. Will we be seen differently?
If you happen to know me or follow me in the normal circles I tend to be in, then you already realize that this isn’t a typical “data-driven” or Tableau-related post. I hope that despite that, you stick around because I truly believe that community and trust are what motivated me to write and share these words.
For many years I openly and willingly shared my skills, expertise, advice and knowledge about data visualization and Tableau with the DataFam. I’ve become more aware that people often share deep personal experiences through data stories, some of which are mental health related. You don’t know how happy it makes me to see more and more personal data stories.
I’m writing this specific story because I want to break a few myths about my mental health diagnosis while also putting myself out there in hopes that some of my experiences resonate with someone else. This is the path towards breaking stigma – one step at a time to show people that you are not alone and others are just like you. You do not have to be silent.
Here are a few visualizations on mental health if you are interested:
- The Storm in My Brain (epilepsy) – by Agata Krawczyk
- Depression – by Nicole Klassen
- You Are Not Alone (PPD) – by Jacqui Moore
- The Ripple Effect (addiction) – by Jennifer Dawes
- Mental Health – by JP Copreros
- Depression in Britain – by Chimdi Nwosu
- Myers Briggs (personalities) – by Lindsay Betzendahl
- Are the Kids Okay (mental health admissions) – by Lindsay Betzendahl
Breaking Myth #1: If you are academically successful you can’t have ADHD
I went to Bucknell, a private liberal arts college, and initially was planning to be a biology major but quickly realized there was something missing. I switched majors to pursue Psychology and English, giving me insights into behavioral, psychological, physiological, and personality differences and experiences. At the time, my understanding of mental illness was pretty minimal. One semester I took a course where we had to spend time at the local psychiatric hospital interacting with patients. These were some of the sickest patients and so my introduction into mental health was a dramatic one. However, I know now, as most people do, that mental health is varied and differences in both diagnoses and symptoms even within the same diagnosis are highly varied.
During this time, I didn’t know I had any mental health needs or diagnosis. I hadn’t been diagnosed with anything yet, but that didn’t mean that I didn’t have symptoms. They just weren’t an impairment in college. This is why I broke myth #1. I did very well in college ,as well as high school, graduating Magna cum Laude with my double major in 3.5 years (yes, I graduated half a year early).
After college, I went to graduate school at the University of Connecticut to begin my master degree in Marriage and Family Therapy (MFT). After graduation and after completing all the necessary clinical hours and supervisory hours, I passed the state MFT exam and officially was a Licensed Marriage and Family Therapist (LMFT) in the state. I did very well academically, but I also worked very hard to achieve all of this.
But wait. You can’t be academically successful and also have ADHD, right?
Wrong-o. I have ADHD — Attention Deficit Hyperactivity Disorder. In fact, I’ve learned that women, specifically, are pretty good at masking ADHD symptoms. A post by LittleMissLionHeart really struck me – in fact, the whole post felt like my story. She says, “[A woman] may find a way to hide, or even overcome some of her symptoms, but it comes at a great cost.”
How many (including myself) with ADHD can be successful in school:
- We can focus, but usually only if it’s interesting. If not, then it takes a ton of mental energy to focus, which can be exhausting.
- I sometimes had to skip a class because my brain was so tired from focusing for 1 or 2 hours.
- We many need to study a lot.
- I used to take notes on lectures or readings and then would take notes on my notes, further reducing the text. I often highlighted my reduced text and then might make flash cards. All so that the key points would stick in my brain.
- We doodle, pick, or fidget in order to quell some of the racing thoughts or energy.
- I used to doodle a lot in college. In high school I picked the skin on my finger tips and in grad school. I started picking my hair.
- We may get up often from class and walk the halls for a few minutes just in order to make it through the rest of class like everyone else.
- I used to get up a ton in graduate school. I would go to the bathroom, or just walk around because sitting for long periods of time was extremely difficult.
- We schedule everything in our planners because if we don’t write everything down we will forget it.
- Ever since high school, I loved my daily planner. I wrote all my assignments, crossed out ones I finished and highlighted those that I still had to complete.
I developed a lot of coping mechanisms and skills to manage symptoms partially because I was a perfectionist and had a strong desire to excel in academically. In my professional career, I was also successful, but for some additional reasons.
I typically have a crazy amount of energy, impulsivity (which can be good), and a plethora of ideas that are cascading into my brain like the Niagara Falls. When people need innovation? I’m your gal. Need to spark energy in a company? I got you covered. Need someone to say the tough stuff? I’ll say all the unfiltered things. Sure, these strengths can certainly be weaknesses. Have I said things impulsively that I regret? Oh, yes. Do people get annoyed when I interrupt? Who wouldn’t? However, if you are self-aware, you can be more conscious of these slips as well as develop methods to reign in the ADHD tendencies when, perhaps, they aren’t are optimal.
Regardless, I’ve been lucky in the sense that my hyperactivity and ability to move from one thing to another has worked out, generally, in both my academic, professional, and personal life.
A Quick History Lesson
Historically, people often think of ADHD as the young hyper, chatty boy who cannot sit still or focus in school. Some of this stigma is due to the history of the diagnosis and who the diagnosis targeted, which was initially children.
ADHD is actually a complicated disorder that presents differently — if you’ve met one person with ADHD, you’ve met one person with ADHD. Females are often under-diagnosed because symptoms can present differently than in males. For example, women are often misdiagnosed with anxiety or OCD, when it’s really ADHD. I actually probably could have been diagnosed with these if someone hadn’t more thoughtfully considered my symptoms and not just their presentation.
However, psychiatrists are still learning and ADHD is still quite new (well, a lot of psychiatry is). ADHD was first mentioned in the early 1900s, but wasn’t recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 1968, over 10 years after the first publication of the manual.
- 1952 – DSM-I, no disorder that represented the symptoms of ADHD. Total Diagnoses: 106
- 1968 – DSM-II, the addition of a childhood disorder called “hyperkinetic reaction of childhood” — not exactly representative of the ADHD I experience daily.
- 1980 – DSM-III, diagnosis was changed to ADD
- 1994 – DSM-IV, diagnosis changed to ADHD
- 2000 – DSM-IV-TR (the one I used in graduate school), ADHD was divided into three subtypes: combined type, predominantly inattentive, and predominantly hyperactive-impulsive.
All this to say, it’s not surprising no one noticed my behaviors in the late 1980s when I was a kid or even when I was in college from 2000-2004. ADHD was very new. Additionally, people usually don’t seek out a diagnosis unless there is a functional impairment — meaning that the symptoms are interfering with some aspect of life.
ADHD tendencies, as with other diagnoses, can be positive. For me, I wasn’t struggling as a child in any part of my life so it make complete sense why ADHD wasn’t a thought for anyone who knew me. This is true for many who are diagnosed in adulthood, I believe. It’s not that you didn’t have ADHD “back then” but the symptoms just didn’t cause any functional impairment until adulthood. This takes us nicely to myth #2.
Breaking Myth #2: To have ADHD you must be diagnosed in childhood
In 2005, during my first year of graduate school, I started to notice the symptoms of ADHD in my daily life, however, I didn’t connect the symptoms to a diagnosis. Despite excelling in the academic sphere, there were lots of little signs along the way in my childhood that could have pointed to ADHD but certainly wouldn’t have been picked up in a spunky, loud, smart, young girl. It wasn’t until the symptoms became more problematic, or inhibiting, that I became more aware of them. Or maybe it was because I was practically in therapy every day for 2 years with 10 people during graduate school. Either way, I became really aware of how my brain was a bit “different”.
During my time at UCONN, I noticed that I was increasingly more impulsive (emotionally, sexually, financially, relationally, etc.). I struggled to sit for long periods of time and got up more frequently during class despite being interested in the subject. I couldn’t for the life of me resist the urge to interrupt people or to finish someone else’s sentences, and most pronounced of my symptoms was the beginning of my horrible hair-picking fidgeting habit.
[Side bar – While I never analyzed or diagnosed my dad, he always said he had undiagnosed ADHD and dyslexia as a kid (remember it wasn’t really a thing in the 50s/60s). Since ADHD is genetic, this could be valid.]
At the suggestion of my professors, I sought out a psychiatrist on campus who diagnosed me with ADHD and prescribed me medication. I was around 22 — diagnosed in adulthood. I’d never been on long-term daily medication before, so I didn’t know what to expect, but the result was clear. It helped. Receiving a diagnosis of ADHD in adulthood isn’t that uncommon any more. In fact, I know a number of people with a similar story.
- Lifetime prevalence of ADHD among youth aged 13-18 years: 8.7%
- Males at 13.0%, females at 4.2%
- Current prevalence of ADHD among adults aged 18-44 years: 4.4%
- Males at 5.4%, females at 3.2%
- Lifetime prevalence of ADHD among adults aged 18-44 years: 8.1
After the diagnosis, I began my journey learning more about how the diagnosis presented itself for me and how certain life events could change or exacerbate my symptoms, as well as how medication helped. However, as with many things, we can lose focus on things when all is good.
Breaking Myth #3: You have to be on medication
Medication, to be honest, helped me almost immediately. However, I wasn’t on them for very long. After finishing my masters degree, I got a job as a clinician and because my original prescriber was through the university, I needed to find a new one to continue the medication. For someone with ADHD that is one more thing on the never-ending list, so I stopped taking it when I ran out. Besides, I had a new job, was thriving and successful, energized and creative. I do well when I have autonomy and creative thought freedom, which I had at my first job.
In fact, being off medications may have improved my career early on. I was an in-home therapist working with kids and their families and children responded to me. I utilized my formal graduate training, but being spontaneous, having lots of energy, and creativity really helped.
I think this is why some people may not realize they have a diagnosis — many of us just learn how to manage because there isn’t another choice. I didn’t realize that some of my habits or tendencies were strategies to cope with the ADHD. For example, I’ve always been overly organized and exceptionally clean. Sometimes these behaviors appear more like OCD (like when I pour the last bit of shampoo from one bottle into the remaining space of a new bottle), but it’s not OCD at all. The reason for this behavior is driven deeply by being incredibly overwhelmed by visual stimuli (such as clutter) around me. If I see something then I will have 100 thoughts about it. If I see 100 things, well, then I have 1,000 thoughts. It’s exhausting. So making two shampoo bottles only one, feels satisfying. It’s not obsessive or compulsive, it’s a solution for reducing stimuli from my environment.
There are benefits of many mental health disorders despite potential difficulties. My ADHD helped me be innovative in my career job. During periods of hyper-focus, I am very efficient. ADHD doesn’t mean you can’t focus, but it may mean that you can focus intensely on certain tasks and non-interesting tasks are almost impossible. In fact, there have been times I’ve stared at the wall or twirl my hair for hours. It’s because I was in thought paralysis and couldn’t get started. I knew I had to, but my brain couldn’t begin because there were too many overriding thoughts and the task I needed to do wasn’t one of them, or because I was so distracted by fidgeting that that’s all I could focus on.
Bottom line is:
- You can be successful and happy without medications.
- There was a nine-year span where I wasn’t on medications due to pregnancy, moving, COVID, and being happy.
- A diagnosis doesn’t equate to functional impairments and therefore not needing medication doesn’t mean a diagnosis doesn’t exist.
- Without daily difficulties, I didn’t seek out medication for many years. I thought about it now and again, but situations were that much of an issue to make a phone call.
- Medication is not a one-size-fits-all solution or need.
- Some people function better with the help of medication and/or therapy, and others don’t need it at all. As with many mental health diagnoses, there are spectrums and different needs at different times of your life.
Breaking Myth #4: ADHD isn’t a real mental health issue
There is nothing more harmful than telling someone their situation or experience isn’t valid.
As with many mental health issues, there are many contributing factors that can exacerbate otherwise manageable symptoms. Twice in my life, I’ve experienced feelings, thoughts, and symptoms that were frightening and debilitating.
The first episode was after I had been working for a few years as a therapist post graduate school. My fiancé, now husband, and I had been living together and planning a wedding. In addition to planning a wedding and working with youth with serious mental illnesses, I also had been running my own clinical private practice early in the morning and late at night. I was burning the candle at both ends.
What I wasn’t aware of was how this was going to affect my ADHD. In fact, I hadn’t thought about ADHD for approximately 3 years, so the symptoms that I started to have surprised the crap out of me.
The ADHD brain processes everything and is basically a sponge that doesn’t filter what it soaks up. This is why people with ADHD are often distracted — we struggle to not pay attention to everything so therefore it appears as if we aren’t paying attention to anything. It’s really the opposite. Everything is simulating and changes what we are attentive to.
So, sure, I had a lot of feelings of being overwhelmed (expected) and maybe even panic (reasonable), but because my brain struggling to slow down all the thoughts, including filtering out the ones that weren’t necessary at the moment, everything felt like a torrential hail storm of emotions, thoughts, and impulses that I no longer could control.
The result was some very unexpected intrusive thoughts that even my ADHD brain normally could filter out.
TRIGGER WARNING: I’m going to talk about the intrusive thoughts that I experienced, which normally my brain filtered out. Some include self-harm. Please skip to the next myth section if that may be triggering for you.
I first noticed the thoughts while driving to work. I imagined swerving my car off the road and flipping over. I felt the impulse to do it in my brain, but in no way was I suicidal. I wasn’t even depressed. It was like the ideas of depression without the feelings. I would image terrible things such as falling down the stairs and breaking all my bones, or being impaled by a pipe that may fly off a truck in front of me. I then would experience moments of panic, which felt like a panic attack, but I wasn’t anxious. It was more like my brain was so filled with thoughts and things that I thought I was going to explode. It felt like the physiology of anxiety, but not the emotional part. I felt a bit crazy to be honest.
Finally, I broke down and called someone who saw me the next day. Within that hour the therapist made it clear that my ADHD was significantly impacting my ability to regulate intense emotions and filter out unnecessary stressors. Not too long after, I found a psychiatrist again and was back on medications for another few years (maybe 3?) until I got pregnant in 2013 when I stopped again.
Fast forward 9 years and I was still off meds and was generally doing fine. Until I wasn’t again. The second episode occurred in 2021 and was very similar to the first. I will end this post explaining the significance of it.
Breaking Myth #5: Don’t Tell People About Your Mental Health
We all can agree that many parts, if not all, of the past few years were exceptionally difficult emotionally, financially, spiritually, physically, etc. COVID really f*cked with us. Mental health issues soared and many of us were isolated and unable to share those stories as openly or spontaneously as we may have before.
I had a hard time in 2020. I had just moved my entire family from CT to PA in the summer of 2019, which was a huge ordeal. I started teaching an 8-week online data viz course at Temple University in the spring. My family was still working on getting our bearings and meeting friends when COVID happened so kids struggled. I didn’t know how to work from home with them present. I was angry, overwhelmed, and burnt out. Then we had a massive flood in our house in August 2020 resulting in almost 50% of our house being unusable. Because of the pandemic, things were slow to be repaired and it took a year until it was all back together. Our whole house was disorganized and turned upside down, plus contractors and construction workers were in and out daily for months. This was deja vu, and I should have been aware, but it had been so many years that I didn’t think all this was going to impact me.
Well, spoiler alert, it did. I had the same intrusive thoughts that I had almost a decade prior. My ADHD brain couldn’t filter out the sporadic thoughts — sort of like disturbing dreams — that came and went. They had no emotional value to me, but were frightening. I was so overwhelmed with thoughts that my brain could no longer filter out the unwanted ones. I also felt the paralyzing feeling of not being able to start or complete projects. I’d sit at my desk for 8 hours and realize at the end of the day I didn’t actually do anything. I contemplated all the things I had to do and froze. It was like a storm of thoughts — and not all good thoughts.
As I mentioned early on, I always was passionate about reducing stigma around mental health and healthcare in general. This is a huge part of why I even started ProjectHealthViz back in 2018. I wanted people to share their stories or perhaps resonate with a topic or a data set. But it was during these past few years that a number of friends in the DataFam disclosed mental health or substance abuse struggles, either personally or in their family. It gave me the space to also share my struggles. How I felt “all over the place” and “paralyzed with a bombardment of thoughts” and an “overwhelming feeling of emptiness of thought at the same time”. The more I did nothing the more overwhelmed I became and the more overwhelmed the more emotionally distraught I became.
But I started talking. I shared these weird snippets of experiences and others shared experiences with me. Suddenly things weren’t so isolating and sharing it made it clear that I needed to get help again. There wasn’t really any question about that, but given my ADHD brain I also procrastinated that for about 6 months until one day I finally had to talk to myself and explain the situation (yes, I talk to myself constantly — I have conversations about conversations I’m going to have). So I said, “you need to call someone and get on medication.” I took a day to find numbers and make phone calls and committed to getting it sorted out, which I did.
In the first appointment with my new prescriber I told her I was doing this for my kids. Because what I didn’t tell you about ADHD (or any other mental health issue) is that it can often affect others, including loved ones. I was incredibly exhausted by the end of the day because my brain was on overload and it is a lot of work physically to try to regulate and sort through all the blazing thoughts. This meant that I was cranky, not present, and irritated with my kids. I yelled. I was frustrated. I was frankly unpleasant.
The crazy thing about being on a stimulant again is that I am not tired at the end of the day. It’s like my brain has the capacity to accurately focus on the important things and ignore extraneous stuff. I sleep much better and am less likely to wake up in the middle of the night unable to fall back asleep. I’m happy at the end of the day and present and available to my kids. I can control what I say to people and keep relationships in tact. I can think before speaking and focus on a task for a few hours without my brain switching gears every few minutes like usual.
If I hadn’t talked to people or if I hadn’t finally made that call to ask for help I wouldn’t be doing well right now. It’s hard to open up sometimes. I get that. My suggestion is find someone you can trust. A good friend. A family member. Someone who may share the same experience or a similar one. Just start talking. The more we talk about this stuff, the less scary or “unusual” it becomes and that allows the space for others to feel accepted and maybe feel safe to get help if they need it.
If fact, a large reason why I was hesitant to ever say “I have ADHD” is because of the fear that people, such as my family or close friends, would actually be the ones that would say “no you don’t” and diminish the struggles that I have daily that they cannot see or experience for me. In fact, the fear in sharing comes from all the above myths that many people still hold as truths: “You are smart and successful. You weren’t officially diagnosed until adulthood. You were successful off medication for years so you must not need it. You should be able to pull yourself up by the bootstraps and just manage — after all, it’s only ADHD.”
These statements aren’t only not helpful, they are hurtful and further prevent people from sharing their experiences, either with ADHD or any other mental health or substance use diagnosis. We need to talk about these things, just as we talk about other aspects of our lives. I believe this in my heart. I know it’s not easy. Trust me. This blog isn’t easy. But I’m here for you. I’m rooting for you. And I’d love to hear your story as well. I’m also open to answering any more questions if I can. 🙂