Guest Blogs

How I Lost 10 Years of My Life

“There is a kind of grief, a sense of simmering anger, that has taken up residence in the space that confusion and hopelessness used to occupy. I lost a decade of my life, not just to one arrogant man, but to all of the doctors that hand-waved my symptoms away, each convinced that they knew my body and brain better than I did. Their apathy and egotism almost killed me.”

Women, PMDD
Imagination of sad women in water, sadness, loneliness, hopeless, problem concept illustration, fantasy surreal painting art, emotional ,beauty

“If it walks like a duck and quacks like a duck…” my psychiatrist responded when I suggested I might have ADHD. Although he trailed off, the words he left unsaid were obvious to me: “Then it’s just standard, run-of-the-mill depression and anxiety. Then I don’t need or want to look into this any further. Then you don’t know what you’re talking about. Then I know better.

I still remember these words and their implications eight years later. I remember what he looked like: a squat old man sitting in his small, cozy office, facing me but not actually looking at me. It felt, at the time, that casually perusing his notes was more important to him than my declining mental health. And eight years later, I’m still angry.

The perception of attention deficit hyperactivity disorder (ADHD) as a “young boy’s disorder” permeates the cultural consciousness, as it has for decades, and the understanding of how ADHD presents in women has lagged as a result. There seem to be a few key factors influencing this ideology: how girls are socialized to internalize behaviors rather than externalize them, the pervasive false belief that ADHD presents identically in both genders, and a general bias against women in the medical industry, both as patients and as practitioners. Unfortunately, I fell victim to most of the above — because I did well in school and had no serious behavioral issues until my late teens, I couldn’t possibly have ADHD.

Women and girls with ADHD are chronically under- or misdiagnosed, to dangerous effect. Even if properly treated, they are more likely to experience domestic abuse, suicide attempts and self-harm (check), social isolation and rejection (check), emotional manipulation and gaslighting, and comorbid mood disorders (check, check, and check). I can just put a big fat check in almost all of those boxes, and I had no idea why these things were happening to me. It seemed nearly impossible to explain others’ actions or my own behavior because it wasn’t just a feeling of being “a little bit different” or “quirky and scatterbrained.” It was a raging, screaming agony that I felt at nearly all times — the kind that constantly pushed me toward suicide and self-harm — and that left a litany of failed relationships, trauma, and emotional carnage in its wake. It was a truly life-threatening failure due to medical negligence.

When my (thankfully) former psychiatrist said those words to me, I was 19 years old — too young to know that I could question and challenge my doctors but old enough to know that something was wrong. Nothing lined up — it couldn’t be depression, anxiety, and PMDD. All of the medications I had tried up to that point to remedy my overwhelming, nearly lethal mental illness weren’t working. In fact, many of the SSRIs, like Prozac and Zoloft, actually made it worse.

[Take This Test: ADHD Symptoms in Women]

A keen nurse practitioner prescribed Wellbutrin for me around that same time, which provided mild relief, but it wasn’t quite enough to make a noticeable difference in my behavior or emotions. Crucially, however, we didn’t actually know why it was working. What was being treated? What was the underlying issue? My family, my doctors, my therapists, and even myself, all believed it was simply difficult, treatment-resistant depression — but, of course, it wasn’t.

I suffered and struggled through college. Though I was fairly academically accomplished, my social life languished and romantic encounters ranged from negative to downright traumatic. I was unable to pursue my passion for music and my mental health deteriorated rapidly. My impulsivity, my genuinely harmful expressions of pain, chased people away, and the abandonment hurt all the more due to what I now know is rejection sensitive dysphoria. Long story short, the Wellbutrin simply wasn’t cutting it.

Graduating college with more than a handful of suicide attempts under my belt left me drained and hopeless. My career suffered. I knew I was talented, I knew I was smart and passionate, but I just couldn’t show it. The drive to find a solution, to “fix” myself, became more frenzied by the day. After all, how could I succeed when I called in sick to work more often than I showed up? Or when I had to sneak off to the bathroom to cry when my editor critiqued my work? Or when my fear of rejection was so paralyzing that I stopped writing creatively altogether?

I burned through medication after medication, attended months-long intensive outpatient and partial-hospitalization programs, and cycled through ineffective therapists and psychiatrists until I finally found my current doctor. He was the first psychiatrist to actually listen to me. It was astounding. He sat with me for four hour-long sessions to get a complete, almost overly detailed medical history before he slammed me with a new diagnosis: Bipolar II. Suffice it to say, my world was rocked. Was this the answer I had been looking for? Well, it turned out only partially.

[Think You Might Have Bipolar Disorder? Take This Test To Find Out]

Mood stabilizers seemed to smooth out a little bit of the emotional turbulence, but it still wasn’t enough. The lithium made me hypomanic and I put on 60 pounds. The lamotrigine by itself was hardly effective. With every new medication I tried, I felt like I was cycling through the keys on a keyring. Each key I tried looked like the right one, but none of them turned the lock. I felt like I’d hit another wall, helpless against the overpowering force of my own seemingly broken brain.

Things turned uglier as the years passed. Suicidal thoughts were a constant companion, and I was afraid of ending up hospitalized or worse. I had to take what was to be my fourth short-term disability absence from work and, after a second opinion or three, had managed to convince my psychiatrist to sign off on electroconvulsive therapy. Although it’s an incredibly effective treatment for bipolar disorder (and not nearly as scary or unsafe as movies like One Flew Over the Cuckoo’s Nest would have you believe), it was hell on my body. The positive effects couldn’t last without continued treatment, so I resigned my efforts after my first three-month round of administrations.

The dead ends just kept coming. I was vacillating in and out of a suicidal state, depressed, then hopeful, and then hypomanic, but always misdiagnosed. Finally, eight years after that psychiatrist hand-waved away my thoughts on ADHD, I pushed for testing once again — and I really had to push, even with my current doctor. Being tested was a nerve-wracking experience, full of doubts and fears that I might just be chasing another fruitless treatment or wrong answer.

But then something amazing happened when I was 27: I was diagnosed with ADHD. Women are so often diagnosed with ADHD later in life, far later than they should be, and I was no exception. When I was finally, finally put on medication for my ADHD, I felt human for the first time in my adult life. I could be happy and I could be sad. I could actually use the coping skills I had been compiling to function and go to work. I could follow through on my social commitments and even developed new hobbies — but most of all, I could do all of these things and feel all of these feelings without fearing my world might collapse at any moment.

The relief I felt when I heard my diagnosis was astronomical, and it still is, even six months later. Hospitalizations, intensive therapy programs, and painful treatments like ECT no longer seem to be looming just over the horizon. The anticipatory dread of having yet another depressive episode or hypomanic suicide attempt has dissipated. In other words: I’m no longer waiting for the other shoe to drop. It’s hard to put that kind of liberation into words; if you were diagnosed later in life, you probably understand the feeling.

Unfortunately, it isn’t quite over. Today, I discovered another piece of the ADHD puzzle that shed some light on my past: people who menstruate and have ADHD experience the typical symptoms of PMS to a more extreme degree. My PMDD? Explained. The suicidality and destructive behavior that always reared its ugly hydra-like head just before my period? Makes sense now, in hindsight. I cried when I learned this. I cried because the tiny pieces of my mental health are starting to fall into place now.

But I also cried in indignation. There is a kind of grief, a sense of simmering anger, that has taken up residence in the space that confusion and hopelessness used to occupy. I lost a decade of my life, not just to one arrogant man, but to all of the doctors that hand-waved my symptoms away, each convinced that they knew my body and brain better than I did. Their apathy and egotism almost killed me.

Although it’s painful and strange to mourn for a life that never existed, I cannot push that feeling aside — nor should you, if you’ve been through this ordeal yourself. You have a right to your bitterness, your rage, and your resentment just as I do. It is more than understandable to grieve and ache for the time you lost or the things you might have done differently. And it’s completely valid for relief and hope to dovetail with that pain.

Late diagnosis is a complicated thing. That profound sense of longing for an imaginary life, one in which you were diagnosed and could accomplish all of the things you wanted to, can come and go like a wave. Cresting that wave can be overwhelming, so reach out to me if you need someone to talk to or want to share your story. I mean it. God knows another woman shouldn’t suffer another lost decade alone due to the misunderstanding of ADHD. It’s a nightmarish experience already — the least you deserve is some good company.

[Use These Best Web Resources for Women with ADHD]

Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

14 Comments & Reviews

  1. Thank you, Jess! I think many women can relate to your article, being misdiagnosed and suffering a long time before getting diagnosed properly, me included.
    I was diagnosed at 48 years old and I wept at your comment about the right to be angry for all the years I have lost. Or as I call it ‘just barely getting by’. To mourn all that could have been had I gotten help when I needed it. I still feel like being a bystander in my own life without the ability to live the full life intended. Every day is like trying to start up a broken engine. And I did try to get help. Many times. And all I heard was that I had depression and when I refused and said it is not only depression, but an underlying problem that causes me being depressed, no body listened. Just like you describe, they knew my body better than me…well, I did eventually demand to get some help, but as many adult Adhders, did not find medication that works for daily functioning at home or at work…well, it worked but to many sideeffects makes it not worth taking them. And in Norway, healthcare do not like mixing different meds like some other countries. I also have Wellbutrin, it helps a little on moodswings. And a low dose of elvanse, but it does not do much more than wake me up a little. I think many like me, get so tired of fighting to get help because there is not much left to fight with after a long life of misdiagnoses and just coping. For me, it comes in waves, I fight a little and then I give up after a while, then I try again. Now I am in a ‘gave up faze’, so it comforted me to read your article. I wish you and all wonderful adult Adhd women good luck and dont ever give up! Have a wonderful summer!

  2. Hi there:

    I was diagnosed at 37 and will be 40 in a month. I’m incredibly angry, bitter, and sad about all the time I’ve “lost” to this disorder. I would love someone to talk to, but I’m not sure how to reach you?

  3. I just want to say that I know how you feel to some extent. I’m 39 and STILL don’t know what to do regarding my mental health. My parents believed that taking a child to a psychologist or counselor etc meant that the child was messed up in the head and they didn’t want that for me so they never did anything at all for my issues. I found out a couple years ago that I have ADHD *I was born female too* and so I started going to a counselor but then I moved before any real work could be done *I moved away because I lived in a toxic home with my mom* and my counselor retired weeks after. I started going to a new counselor here, but… I only got to go to a few sessions because traveling there is very difficult. I can’t drive due to my poor vision and it’s in a different town. *I live in a really small town now* I don’t know what to do! I am miserable half the time because I can’t stick to anything and my apartment is ALWAYS a mess and I HATE IT! Everyone gets angry at me because I stay in my apartment 24/7 and when I leave it, I get bad anxiety. It’s been that way most of my life. I don’t do people well… I’ve always preferred to be on my own and just play video games but I’m TIRED of living like this but no matter what I do, I can’t fix it on my own and I don’t know what else to do. I feel like I’m drowning in my own failures with no idea of how to get out of it. It’s been 39 years of CONSTANT struggle and I WISH someone would just take my hand and SHOW ME how to fix all this! I am so tired of trying so hard all the time for no results. Oh and my relationships? Talk about strained. I constantly feel like I am being pulled in 5 directions at once. I want to do something on my own but then I see my best friend online and I want to hang out with her, even though I’d kinda rather do my own thing. So I go off and do things with her for x hours. Then BFF number 2 comes online and its time to do things with her. If I do my own thing, people end up giving up on me and its constant work to maintain my relationships. I make friends easily enough, but keeping them? That’s not something that comes natural to me.

    I just wish I was like everybody else. I’m exhausted of how I am and my blindness doesn’t make it any easier.

  4. My story is both the opposite, & exactly the same as yours: I was diagnosed as a SIX YEAR OLD GIRL…but because my parents divorced immediately after my diagnosis, & I had such myriad health issues for which an underlying cause had not been found, literally every symptom or struggle was marked down as a hypochondriac kid acting out for attention from Mommy & Daddy. My Dad was acknowledged to be Adult Undiagnosed at the same time, but because he’d aced college & medical school, I was expected to be able to bootstrap my way through life as successfully as he had with zero help, or I was willfully failing. I was put on a low dose of Ritalin, which took maybe 15% of the edge off. Anything the medication didn’t fix was me “acting out” (by struggling with my homework?!!).

    By 13 I was 50 lbs underweight, & my 10 mg of Ritalin was blamed for nerfing my appetite, so they tried me on Adderall. I was prescribed 10 mg to start, with plans to ramp me up to 20-25 as soon as I adjusted. Because I was so small & reacted wildly to medications, I asked that I start at half that, & that first day my Mom & I privately decided to half that again, with a pill cutter. I overdosed so severely on that 2.5 mg that I don’t remember 2 weeks of 7th grade. I thought classmates were pranking me by pretending the date was later. After that, it was decided it was too dangerous to try to find a medication that would work for me, & try to find coping mechanisms through therapy (finally). All my appts. were rescheduled multiple times or cancelled outright, though, because my Dr. was now deeply entrenched in a fight against cancer. She passed a few years later, & when I asked to find a different Dr., I was told I no longer needed a “childhood therapist.” Every class in high school or college I either aced or failed/baaaarely pulled through. Professors accused me of lying to their faces when my phantom illness/brain fog, in addition to my ADHD, caused me to haunt their office hours. My capstone professor called me a “disgrace,” & promised to block any attempt at finding someone to recommend me for grad school. It wasn’t until after I finally graduated that I figured out I had celiac disease. My GP shrugged & said “I’ll note it in your file.” My OBGYN was far worse.

    I’m now 36, & still have never had any positive treatment whatsoever. For anything. (I lost access to healthcare when I aged out of my parents’ insurance in the middle of college.) 30 years of gaslighting. From medicine, professors, bosses, literally every field in which I interact. And I still don’t know what my underlying autoimmune deficiency is caused by, beyond the celiac disease.

  5. Thank you for writing this article.

    I am so much like you. I have also lost 10 years to misdiagnosis. Also bipolar II. I am tapering off my mood stabilizer, which for me, was actually controlling my diabetes. So much so I became hypoglycemic. My weight dropped, for the first time very easily. It was great! I figured it was the med.

    The other side effects, because I didn’t need it – constant anger and irritability. To the point that I would argue about anything with anybody. I’m not argumentative by nature. That is called tardive dysphoria – something Robert Whitaker – an expert in the toxicity of psychiatric drugs is great at explaining. He indicates that TD is when your brain is fighting to get back to its natural balance – to homeostasis. Essentially, it is pissed off those dang chemicals are in there and it’s trying to get rid of them.

    I was diagnosed bipolar when a had A manic episode. ONE. This is what the psychiatric community does now – one episode = drugs for life. Um, no. The DSM says if your manic is because of medication, no bipolar. How about LACK of medication? I stopped taking my SSRIs. They weren’t working, I was emotionally numb, so, I quit. That is NOT bipolar, that is a manic CAUSE BY MEDICATION.

    Are these doctors idiots? I don’t have an M.D. and I can read the dang DSM better than a shrink? I also figured out what my diagnosis SHOULD have been: borderline personality disorder.

    I’ve been in, and out, of therapy since 1994. That’s how long I’ve had depression. ADHD diagnosis in 2003. Bipolar 2010. Insomnia maybe the late 2010’s I started melatonin. I’ve seen five therapists, just started with a sixth, and NONE of them could figure out my diagnoses were wrong? Not until I saw a very new therapist in 2018 did anyone suggest maybe I don’t have bipolar. So I started thinking that and doing a ton of research to figure out why I feel so crappy.

    Misdiagnosed AND over-medicated. I still feel like crap. I’m asking my psychiatrist to support me applying for disability and getting into Case Management. My diagnoses and meds need to be re-evaluated by someone who sees me enough to get familiar with me. Once a week isn’t enough.

    I wish everyone who is struggling with mental illness blessings and strength from our Creator God. Hang in there until you can get the help you need. There is always someone. If not, please talk to God. He saved me when I begged Him to strike me down because I couldn’t stand living anymore. He sent me a warm hug (spirit, angel?) and my parents came home (from vacation) to support me. Spirits and angels sound crazy. To some people they may be. To a whole lot of people, they are very real. You just have to believe.

    Like all of us need to believe in ourselves. Love ourselves. Accept ourselves. God created you. He loves you – even when you think you aren’t good enough – God thinks you are – you are his child. He wants us all to be happy and thriving, not struggling. There are secrets to learn to lift suffering from us all.

  6. You have just described most of my life including not being able to pursue my musical interests. I first suspected ADHD looking at my overactive toddler son and it was only after reading about it that I realised that actually, I might be the one needing treatment. My therapist is medication averse and waived me off but I knew I was right. So only after a second opinion at almost 47 I have now been on Ritalin for 3 months. I can feel the difference and even with the mild side effects, I would rather be on it than off.

  7. I have a similar story. I too got diagnosed first with depression, then anxiety, in my early 20s. Meds killed my ideas along with my sex drive. I went from med to med to med for the next 20 years, had the awful PMDD you mentioned too. Then at 40 I moved to NYC, and saw a different class of psychiatrist, who diagnosed me with Bipolar II. At first I was horrified, but he said “Oh all the movers and shakers in NYC have Bipolar II.” One of the meds put me on a more even keel briefly, but they had too many bad side effects: hair loss, insomnia, bleeding gums, weird feelings. While in NYC I had access to a famous ADHD doctor, and he put me on various meds, which sort of worked, but then I felt too “revved up”most of the time and it was exhausting. I got so tired of the whole mess and got off everything. and then I discovered plant medicines. I did ayahuasca, and afterwards, I was calm, focused, felt pleasant. I thought, “OMG this is how most people feel!!” Psychedelic mushrooms did the same thing. The best thing that has helped me feel focused and emotionally regulated is microdosing mushrooms. I know many other people like me who have also been helped. It’s a tragedy that they’re still illegal.

  8. Jess,
    Your story really struck a chord with me. Although I’m a male, everything you wrote hit home hard. I finally self-diagnosed myself with ADHD at age 60 after reading one of Dr. Hallowell’s books (“Delivered from Distraction”) and seeing myself in every page. And I only read that book because I was researching a supplement I had taken that made me feel more energized and alive than ever before, and I was curious about some references to successful use of it for ADHD that I found in medical journal research articles on this supplement. Two decades earlier, at age 40, I had sought out an acclaimed neurologist at a Harvard teaching hospital to explore a potential neurotransmitter imbalance which I was convinced was my problem after reading another book, “The Edge Effect” by Eric Braverman, MD. I was then referred to this premier hospital’s “Psychological Testing Center” for an extensive battery of tests performed by its Director, who subsequently informed me there was nothing wrong with me. Another 20 years went down the drain until, at age 60, I consulted with the same hospital’s ADHD program (after reading Hallowell’s book), and I was told at my first office visit that I indeed had ADHD. It’s been 2 years since then and (like you) I constantly ruminate over the life I never had the chance to live. My initial relief over a long-belated and elusive ADHD diagnosis has given way to the same anger and bitterness you describe so well. I barely managed to graduate at the bottom of my class at one of the most academically rigorous secondary schools in the country, yet I scored the highest combined SAT scores in my state Senate district of 160,000 residents in 10 cities and towns within 3 large suburban counties. These scores earned me a 4-year honors scholarship at a national research university, which I breezed through with very little work and graduated with honors from its business school. I then worked for 6 years at two prominent “Fortune 50” global corporations while I completed a graduate finance program at B.U. and an Executive Program at M.I.T., followed by 15 years at two global financial institutions and completion of a Doctorate in Law and an advanced post-doctoral program at Harvard Law School. An uninformed observer might call me “successful” but my life has been a living hell until now. I have lost many cherished friendships through impulsive and/or emotional outbursts or reactions, alienated all of my family members by late arrival to every family event, suffered through a lifetime of anxiety and panic attacks, been overweight for much of my life due to constantly craving the dopamine surge that comes with high-sugar foods, engaged in binge drinking on weekends into my mid-50’s, and I have no kids because I knew I couldn’t handle such a responsibility with “whatever” was terribly wrong with me. I also feel like a failure because my potential has never been realized, while my brother (who I believe has a much milder form of ADHD than mine) has become a multi-millionaire entrepreneur who’s worshipped by my entire family, his 700+ employees, his industry where he’s on the cover of magazines as an international success story, and the many dozens of beautiful women who have populated his life for decades. I often think about my father dying at age 67, which causes me to somberly consider I may have less than 5 years left to live whatever semblence of a “normal” life can be squeezed into the remaining years of my existence, and it makes me sad to imagine what might have been if the curse of ADHD had not been visited upon me. C’est la vie.

  9. I have just been diagnosed with ADHD – at the age of 40.
    I have wasted years and years of my life because medical professionals refused outright to listen to me. I started on Prozac at 15 years old (by which point I was already self-harming and had an ED) and it just got worse from there. Years spent on useless medication and in pointless therapy which, when I tried to tell them it wasn’t working, I was told “well, you’re obviously not trying hard enough then!”
    In the end I had to pay for my assessment privately, which took less than half an hour before the psychiatrist told me he was amazed that I hadn’t been diagnosed earlier.
    Now I have to cope with the sense of bereavement and loss of half my life because medical professionals refused to listen to me.
    I’m lucky that I have a good support network – my current partners both had ADHD as well, and my close friends have listened to me when I told them the difficulties I have – but there’s still that locked box of anger and resentment in the back of my mind that I don’t know what to do with

  10. I was not diagnosed until I was 55. Fortunately, despite having to work harder at EVERYTHING, I developed enough coping skills to get thru graduate school and most of my adult life. Also, fortunate for me, my psychiatrist ‘believed’ in adult ADHD. The first few days after starting medication I cried a little off and on, feeling sorry for my self (two words intentional) wondering how different my life would have been if I had realized that there was something neurobiologically wrong with me i.e., ADHD. An additional kicker to all this is I am a therapist. HA!

    As a good ADHDer I am taking the scenic route to my main point. As a result of my diagnosis I started seeing it in a few of my friends and many of my adult female clients who heretofore had not been diagnosed with ADHD. With my clients I can not tell you how many had only been partially diagnosed and unsuccessfully treated for anxiety and/or depression by well intentioned family physicians or ignorant psychiatrists. It was a bitch trying to convince them of this additional diagnosis of ADHD because we all know (sarcasm) only little boys who can not keep their ass in their seat have ADHD, and mostly outgrow it. Most of them felt hopeless, did not trust therapists or doctors, and were reluctant to accept ADHD as THEE major part of their issues. I had to work hard to convince them to hang on to my hope and belief that their life could be better with the right medication. The majority of those brave women did hang on to my coattails of hope and follow thru on referrals to enlightened psychiatrists, and found they could get a life that worked for them. It was the most gratifying work of my career and I felt honored to work with those women who entrusted me.

  11. I’ve just been told by my psychiatrist that i’m too old to get tested and my insurance will not pay for this, she also said that you have to be tested in childhood, which is not true, she wants to continue with her treatment of antidepressants which don’t work. I’ve called my insurance and they said, no they pay for adhd diagnosis and treatment, just need a statement from the physician. I’m 54, and all the indications are showing that i have adhd just never been tested, have been taking antidepressants for over 20 years. She put me on prozac last month, which is a stimulant too besides being an antidepressant and i’ve felt energized. could not continue to take it because of the side effects. i’m finding myself in all the stories that i read here on additude magazine webpage. i don’t know what to do now.

Leave a Reply