The Strives,Struggles,and Successes of Women Diagnosed With ADHD as Adults

The symptoms and events that led to the ADHD diagnosis

Although none of the women were diagnosed until adulthood, each expressed clear memories of one or more early signs consistent with ADHD, mainly in the form of inattention and concentration problems, disorganization, forgetfulness, motivational difficulties, procrastination, and, in turn, underachievement (Barkley, 1997; Biederman et al., 1999; Volkow et al., 2011). Teachers and parents noticed and commented on several of the same difficulties, without attributing these to a possible ADHD diagnosis. The women describe feelings of frustration, confusion, and self-blame.

I tried to plan ahead and get things started earlier, but I just couldn’t do it. It was as if I needed the panic of not understanding something, and knowing that I would get a test in it, to get the adrenalin going so that I could get it done. It’s extremely stressful! Especially since you’re also beating yourself up, because you’re thinking “How dumb, and here I did it again, why can’t I just do it ahead of time?” (Beth)

One of the participants did not have academic problems, but struggled socially and particularly with regulating her emotions: “I remember having temper tantrums that would scare me, because I realized that I couldn’t control them, and I didn’t even know why I was so upset” (Emily). Consistent with the literature on women with ADHD (e.g., Agarwal, Goldenberg, Perry, & Ishak, 2012; Babinski et al., 2011; Hinshaw et al., 2012), inattention, disorganization, poor time management, motivational difficulties, and problems with planning and structuring daily tasks have resulted in significant academic, occupational, and psychological challenges for most of the women. In the absence of a better explanation, the women blamed their struggles on perceived personal flaws, such as laziness, lack of effort and capability, which, over time, contributed to a negative self-image that followed several of the women into adulthood.

In spite of difficulties from an early age, none of the women were diagnosed until they self-referred to medical professionals for evaluations of ADHD as adults, after having heard and read about adult ADHD. Several of the women had tried to find other explanations for or possible causes of their problems, but they immediately recognized themselves in descriptions of ADHD that dealt with, for example, relationship issues, time-management problems, concentration problems, indecisiveness, and disorganization: “I read an article that explained some common tendencies in adults with ADHD, and, while reading it, I felt like I was checking off a checklist” (Emily). One of the women explains that things became more problematic when she turned 17, particularly in terms of poor time management, concentration difficulties and indecisiveness.

I went to the medical center while I was in College, to get an evaluation for ADHD, but I think I was way too moderate when answering questions about time management, concentration and so on. I think that they thought that my problem was anxiety, and I definitely had some anxiety issues going on, just because the time management thing was driving me crazy. I went to the medical center again later, and I was more honest about how I felt, and at that time I was diagnosed with ADHD. (Christine)

The women’s lack of external displays of hyperactive and interruptive behaviors in childhood, combined with little knowledge about ADHD in girls, might help explain their late diagnosis (Hinshaw, 2002).

Receiving a diagnosis: Mixed emotions

The participants’ responses to being diagnosed with ADHD were mixed, varying from relief to feelings of hopelessness.

I think I had multiple reactions; in some ways, it felt like a relief, because at least it means that I’m not lazy or stupid. On the other hand, I felt like it was an excuse. (Christine)

It was kind of a relief to get diagnosed; it kind of confirmed what I already knew in the back of my head, but I also felt hopeless. Because now I know it’s not me, it’s not like if I work harder I can do better. Sometimes, I feel very depressed, because no matter what I do, this is like a bad disease that I can never cure. (Amber)

The diagnosis made by a professional served as a validation of struggles; it confirmed that something was different, and gave meaning to and an explanation for many of the women’s experiences and difficulties. The diagnosis made it possible to relocate feelings of guilt and shortcomings to an “external” cause, which was positive for self-image because then they were not blaming themselves anymore. There was a reason for their problems. Moreover, with the diagnosis came access to adequate treatment strategies and a feeling of kinship with other people with ADHD. The experiences described by the women in this sample are consistent with the findings by Young et al. (2007).

Although several point out that an earlier diagnosis and treatment could have been positive for academic functioning and self-esteem, the women do not necessarily feel that they have suffered from not being diagnosed earlier. However, one of the women points out that she missed the chance to learn many of the things that she has to work on now, such as organizational skills and time management. Two of the women wonder whether they would have used an early diagnosis as a crutch or an excuse to work less hard, because—as one points out—“I push myself very hard, and that got me a lot further than I could have come.”

Everyday life with ADHD: Unfocused, disorganized, and chaotic

Executive and motivational dysfunction affect the regulation of cognitive processes involved in goal-directed behavior, and can manifest as poor time management, a tendency to easily get bored, procrastination, indecisiveness, disorganization, and dysregulation of attention, behavior, and emotions (Brown, 2009; Nigg et al., 2005; Nussbaum, 2012; Volkow et al., 2011). The participants struggle significantly with indecisiveness, for example, “I’ll flip from one option to the other and drive myself and everybody else crazy,” as well as with stress and feelings of unpredictability resulting from poor planning and structuring skills.

The act of constantly having to make decisions is what you do when you don’t have a routine; you constantly have to make decisions, and I think that my inability to get into a good routine sometimes causes anxiety. (Beth)

Poor time management leads to problems with making realistic and manageable plans for the day, and with getting to work and social events on time, which, in turn, lead to self-blame, chaos, and stress. One woman says that she constantly underestimates how much time things will take, and ends up feeling bad when she does not get them all done.

Closely tied to poor time management is procrastination, understood as a form of self-regulatory failure and associated with academic and professional underachievement; feelings of guilt; negative mood; and chronic stress (Steel, 2007). The majority of the participants have struggled with procrastination from childhood, and several describe high levels of stress because they do everything last minute, which leaves them with a constant feeling of running out of time. It can be hard to plan and execute daily tasks due to problems with obtaining an overview and knowing where to begin, and small tasks often grow into seemingly complex and overwhelming operations, which lead to procrastination and missed deadlines.

Motivational difficulties: Need for structure and external pressure

The women struggle with motivational difficulties, and a tendency to get bored easily; the mere thought about boring and seemingly never-ending tasks can result in negative moods. Motivational difficulties, intolerance for boredom, and a tendency to avoid mundane tasks and give in to immediate temptations are described by several authors as common features of ADHD (e.g., Asherson, Manor, & Huss, 2014; Barkley, 1997; Volkow et al., 2011). One woman says that unless a project is very interesting, she is going to work without being able to work, and another points out that “A lot of people I talk to say that they want to be an expert in something, but I wonder if for me, that would mean that things would just become boring. I get bored easily” (Christine).

On the other hand, the participants describe periods of “hyper-focus,” where they can work continuously for hours on projects they find interesting. Open-ended tasks can be challenging due to high distractibility and poor self-structuring skills, while interesting and externally organized and structured tasks accompanied by short-term pressure (i.e., immediate reward) promote motivation and productivity.

The thing with ADHD is that if you lower your expectations, you’ll lower your efforts, and then also do worse. I think that for ADHD people, pressure works. Short-term pressure works, lowering expectations does not. No matter how much you lower your expectations, you’ll still have problems getting to work and finishing it on time. (Amber)

I definitely feel that when my days are busier, I use my time more efficiently, but if there’s more open ended time with just one large task, it can be harder for me to use that time well. And also, if I have to do something on the computer that requires a lot of thinking, I find myself going on the internet as soon as I have to think extra for a second, and that’s frustrating. (Christine)

Overwhelming emotions and constant worrying and rumination

Difficulties in regulating emotions are common among adults with ADHD (Asherson et al., 2014). Several of the women describe difficulties regulating negative emotions in particular, as well as a general fear of losing control, as problematic and something they attribute to their ADHD diagnosis, for example, “There’s a lot to ADHD, like anger. I have a lot of anger issues, and problems controlling emotions. It’s not only problems with concentration and organizational skills” (Amber).

For several of the participants, mood and emotion regulation skills clearly suffer when they are stressed, which often seem to be influenced by distractibility and disorganization, for example, stress resulting from the new distractions and responsibilities that come with motherhood.

One participant is struggling with impulsively saying exactly what is on her mind when she gets angry, and can end up hurting others, often unaware of doing so or of the tone in her voice when she says something. Communication difficulties, combined with problems regulating emotions, cause conflicts for her in romantic relationships. In other studies, these are described as common areas of impairment for women with ADHD (Babinski et al., 2011).

None of the women are clinically diagnosed with a mood or anxiety disorder, yet four of them describe that they struggle noteworthy with excessive worrying and rumination, as well as other features associated with anxiety and/or depression. According to Quinn (2005), feelings of anxiety and depression are commonly reported consequences of inattention in women with ADHD. Feelings of unpredictability and lack of control on a daily basis contribute significantly to these issues for most of the participants; some say they are constantly worried and “think too much.” One woman describes heart problems resulting from stress, and several episodes of what she experienced as depression, which she relates to feelings of lack of control and unpredictability in her life. She feels that things can fall apart in a second, and if she cannot hold on to a job and an income, her whole life will fall apart—“it’s so scary.”

For some, disorganized thinking and fear of breaking social norms have contributed to feelings of performance and social anxiety, while one of the women describe indecisiveness and feelings of being overwhelmed and not in control as the main contributors to her anxiousness and disordered eating in college.

I would get so overwhelmed by the amount of work that I had to do, that I’d freeze up, not knowing what to do, or end up not doing it. That was hard. I felt very out of control with myself, and, in fact, I think that I could probably have been diagnosed with an eating disorder at that time . . . I felt so out of control with my life that I was trying to control what I was eating. And by doing so, I was doing the opposite; I was even more out of control. (Christine)

A scarred and wounded self-esteem

Poor self-esteem has been identified as a serious and common problem among girls and women with ADHD (Biederman et al., 1994; Rucklidge & Kaplan, 1997). For most of the participants in this study, self-esteem suffered from early experiences of academic difficulties, often followed by negative feedback and questioning of efforts.

In school I definitely felt that I wasn’t smart enough and that lowered my self-esteem. I was always told that I could do better. No one told me directly that I was stupid, but they asked whether I was working enough, and the comments I got were not positive at all, so I lost self-confidence. (Debra)

The women explain that they can be very hard on themselves, and struggle with accepting praise and positive feedback; some say they need to learn how to forgive themselves and restore their sense of self-confidence. One woman describes that her job has turned into routine work and does not challenge her anymore, and wants to find a job where she feels like she is using her brain, because “I’m not so dumb, if I’m using my brain.”

Another participant says that she began feeling the effects of ADHD-related challenges on self-esteem first as an adult, largely due to her problems mastering many of the skills that are involved in maintaining and building a good relationship. Moreover, whether it is professionally or personal, there are things that she has to work a little harder at now than she had to earlier.

Conflict between ADHD symptoms and gender norms and expectations

Many girls with ADHD invest substantial effort in suppressing hyperactive, impulsive, disruptive, and disorganized behavior, as they risk social judgment due to violating norms of feminine behavior (Quinn, 2005, 2008; Waite, 2010). The women experience certain symptoms and aspects of ADHD as particularly challenging as a direct consequence of their conflict with gender norms and expectations toward women, exemplified in the following quotes:

We’ve (women) been raised to take on a lot of responsibilities and make sure that things are okay . . . and I think that it can be extra challenging for women with ADHD, since women almost are expected to have an inborn ability to organize and maintain things in order. (Christine)

I’m definitely not like a lot of other stay-at-home moms, who find a lot of time to do all these things and stuff, while I’m just able to maintain the home in order, and make sure that the kids have places to study. I feel like I don’t accomplish much. (Beth)

When I drop my daughter off at the day care, I’m always late, and I can see what the teachers are thinking. People think you’re a bad mother, right. (Amber)

The women have experienced that there is greater social acceptance of impulsive, disorganized, and energetic behavior in men than in women; that girls with ADHD try harder to act compliant and hide their inattention; and that inattention is often overlooked and trivialized. In the media, they find portrayals of male characters with positive traits that are often associated with ADHD (e.g., creativity, high energy, spontaneity), which they receive positive feedback for, while the more negative ADHD traits (e.g., disorganization) are judged less harshly in men than in women. One woman gives an illustrative example from her former job:

It was very variable how well I would do at work; I would get all these big, challenging assignments—because everything that was a puzzle was interesting to me—but when that puzzle turned into every day routine work, I couldn’t do it. I actually think that if I was a man with the same talent, I’d be seen as a “superstar,” and people would just assign the routine work to someone else. I think women are expected to be able to do all the cleanup and routine work also, in addition to their “main task.” (Beth)

ADHD and motherhood: Challenges and changes

High distractibility and difficulties with initiating a task and going back to it after an interruption became more salient for some after they had children, for example, because it takes them so long to get focused on something, and the children constantly pull them away from the task at hand. One woman feels like she cannot think her own thoughts. Barkley (2002) has pointed out the lack of studies focused on the impact of ADHD on child rearing, and several of the participants would like to engage in more discussions about ADHD and parenting. They are concerned that their children will struggle with school and self-esteem because of ADHD, and are worried that own time-management problems and disorganization will affect their parenting. “I think that I almost come across like careless or selfish or something, so I wonder if like I had a kid, that others would think, like, ‘oh, she can’t keep her act together’” (Christine).

For the participants who have children, motherhood brought additional challenges related to increased organizational and structural demands, and two of the women quit their jobs when they had children, as the two roles became too hard to combine.

I think that things became much harder for me when I became a mom. Because of the constant interruptions from my children, and I remember being exhausted by the end of the day; absolutely exhausted. There are so many things that you have to do when you’re a mom. At work, it was much easier, because it was organized. If I had a problem, I would just call someone and get it fixed, while with kids you can’t do that. So much responsibility lied on me as a mother, which was stressful. (Debra)

One of the women reveals pervasive feelings of guilt for having “condemned her son with ADHD,” and starts crying when she talks about her guilt and worries regarding her children and their future.

I feel so bad for my son, because I’ve condemned my son; my son got ADHD from me, and now he may face the same crappy life that my sister and I have had. I have seen academic difficulties with myself, with my sister, and now with my son. What is he going to do? What is he going to be? (Amber)

On the other hand, the awareness of potential challenges motivates the women to work on their own strategies and routines, and several have positive experiences with their own parents with ADHD, which makes them feel more optimistic regarding their own parenting skills.

Public disbelief as a cause of additional problems, and self-doubt

Public trivializations of ADHD can fuel doubt regarding the validity of the diagnosis, even among diagnosed individuals (Heflinger & Hinshaw, 2010; Hinshaw & Scheffler, 2014; Mueller et al., 2012). The participants experience widespread stigma toward ADHD in the popular media, and even among friends and family members. Trivializations of ADHD, misconceptions about the disorder, and negative press and opinions about the validity and medical treatment of ADHD are core elements in many of the participants’ experiences of stigma. These are among the factors identified as important predictors of stigma of ADHD (Mueller et al., 2012).

I think that people think ADHD is sort of a made up excuse for being unfocused and undisciplined, that it just takes self-control or something. I don’t think that people think ADHD is as real as anxiety and depression. (Christine)

I think that ADHD is often still seen as a kid’s disease, and I think that there’s this perception of adults having ADHD as being immature and choosing not to act like an adult. (Emily)

The women express shock and disbelief over the many ignorant and stigmatizing articles they have read in the media; one woman points out that these get in the way of an actual constructive dialogue on what can help kids and adults with ADHD. Moreover, negative press can reinforce the perceived legitimacy of stigma (Hinshaw & Stier, 2008; Mueller et al., 2012). The often invisible nature of the impairments related to ADHD increases the risk of stigmatization and misconceptions:

It’s a disability that can’t be seen, it’s not as if your leg doesn’t work or something. It can’t be seen, and therefore you get no sympathy from people. (Amber)

Self-doubt following the conception about ADHD as a fake disease was also present in some of the women:

So even today I don’t accept it (the ADHD diagnosis) a 100%, because of the way it’s diagnosed; it’s not like it’s a brain scan or something, or a DNA test, so since it’s qualitative I wonder if it’s really legitimately ADHD that I have. (Christine)

To tell or not to tell: Selective disclosure

One common consequence of stigma concern is avoidance of labeling through concealment of one’s diagnosis (Corrigan & Watson, 2002; Mueller et al., 2012), and the participants have chosen to tell only a few close, trusted friends and family members about their diagnosis. The participants are highly functioning and are not hyperactive or in other ways representative of more stereotypic portrayals of ADHD. One woman thinks that if she told people about her ADHD, “they’d look at me as if I was talking Chinese or something. I don’t think that people understand—unless they have ADHD themselves—I don’t think that they can understand what it is” (Debra).

Because of known stigma toward mental health problems at their respective work places, some of the participants avoid telling colleagues about their ADHD out of fear that doing so would have negative consequences:

I don’t tell anyone that I work with; there’s too much stigma around ADHD for me to want to carry the torch at this point; I’m not there yet. I love my job where I am, and I don’t know if people would have concerns, or be really ready to see problems with me or my performance if they knew I had ADHD. (Emily)

One of the women is thinking about what signals her own diagnosis concealment might send.

If I want my child to have good self-esteem and believe me when I say “you’re as great as anybody else, this is just a part of who you are. It doesn’t matter if you have ADHD, and it doesn’t matter if people know that you have ADHD,” I would have to believe that for myself too. (Emily)

The silver linings of ADHD

The women’s overall perceptions of ADHD, in terms of how they experience the consequences of the disorder on their life and everyday functioning, are closely related to how they conceptualize the disorder (e.g., as a gift or a curse), as well as the degree to which they feel able to control their symptoms. The latter seems to have much to do with whether the symptoms and impairments are perceived as biologically “fixed” or not. Some participants describe ADHD either in positive or negative terms, for example, as a gift with positive aspects or a curse that is incompatible with a normal life, while one woman believes that “assigning good or bad to ADHD can end up crippling your ability, or will, to make changes.” Most of the women can also identify personal strengths, and positive learning outcomes from the challenges they have faced. Several perceive their own positive traits as partly related to their ADHD, such as high energy, creativity, determination, ability to get easily interested and excited about new things, adventurousness, and willingness to take risks.

At school, I had girls getting higher grades than me, but why are they not here? It’s because I’m more adventurous, I can take risks. ADHD does that to you. You know, such a sheltered girl from a conservative family; I came here to the US all alone to study; how did I do that? I think it’s part of the ADHD. (Amber)

It did teach me to be really tenacious though; if I want something, I know I can get it. My creativity helped me figuring out solutions. Maybe that’s a good thing about ADHD; you have to find alternative solutions, and think creatively. (Debra)

Medication and behavioral strategies

All of the women have been prescribed stimulant medication at some point, and most of them are still using it. Two of the women experienced increased anxiousness as a side-effect of medication, resulting in discontinuation for one. Positive effects of medication include improved focus and ability to put thoughts into action, and a reduction of the tendency to ruminate and worry. With medication, it is easier to process information, to understand new things, and to multitask, thoughts are less “all over the place,” and things “generally feel easier.” Medication can also have indirect effects on self-esteem: “When I take medication, I’m so much more articulate and vocal. It’s amazing! The last year I’ve felt more like “Yes, I can!” and that’s so important for self-esteem and self-confidence” (Debra).

Babinski et al. (2011) have pointed out that there is a need for more research on effective treatment strategies for adults with ADHD other than medication, and that health care practitioners should become more familiar with effective interventions for ADHD. One such intervention is Dialectical Behavioral Therapy, which was shown to significantly reduce ADHD symptoms in on-treatment individuals who remained stable regarding medication status, in a randomized controlled trial by Hirvikoski et al. (2011).

Several of the participants experience benefits from exercising, including improved sleep quality and concentration, enhanced mood, and a general increase of well-being. Other important factors are support from friends, family members, and other people with ADHD (e.g. group meetings), coaching, and hearing about which tools and strategies other people with ADHD use to overcome challenges and establish routine and structure. Learning how to make plans more manageable makes them easier to follow through with, which, in turn, promotes self-efficacy and self-esteem. Building new habits and celebrating small steps and successes provides inspiration and motivation to continue making changes.