Abstract
The objective of the study was to aid an understanding of women’s experiences of living with attention deficit hyperactivity disorder (ADHD), with special consideration of the role of stigma and gender-specific issues. Semistructured in-depth interviews were conducted with five women aged 32 to 50 years, all diagnosed with ADHD as adults. The interviews were analyzed in accordance with thematic analysis. The data analyses were centered around five core themes: (a) from unidentified childhood ADHD to adult diagnosis, (b) present main symptoms and challenges, (c) conflict between ADHD symptoms and gender norms and expectations, (d) stigma of ADHD: “People think it’s a fake disease,” and (e) managing ADHD symptoms and identifying strengths. Despite their difficulties, all participants are highly educated and employed, and differ from common portrayals of individuals with ADHD as observably hyperactive, disruptive, or globally impaired. The participants are reluctant about disclosure of their diagnosis, due to fear of negative judgment and lack of understanding from others. The findings highlight the importance of recognizing and targeting ADHD as a serious disorder that yields continuing, and even increasing, impairment in multiple areas into adulthood. Gender-specific issues of ADHD need to be examined further, particularly challenges associated with motherhood. Stigma and the conflict between ADHD symptoms and gender norms complicate women’s experiences of living with ADHD, and should be essential areas of focus in research, educational settings, and the media.
ADHD in Women
Attention deficit hyperactivity disorder (ADHD) represents a heterogeneous and multifactorial clinical disorder, defined by a complex etiology and a group of shared core symptoms, namely, hyperactivity, impulsivity, and inattention (Biederman et al., 1999). More recent models emphasize deficient response inhibition, executive dysfunction, and poor reward sensitivity as the main underlying causes of ADHD (Barkley, 1997; Brown, 2009; Hinshaw & Scheffler, 2014; Volkow et al., 2011).
Once thought to be a disorder that mainly occurred in boys, it is now widely recognized that a large number of girls and women suffer from ADHD, and that it persists into adulthood in 30% to 70% of cases (Barkley, 1997; Kessler et al., 2006). Yet, the diagnostic criteria and the general understanding of ADHD today is mainly based on observations of how the disorder is manifested in young boys, while knowledge about the impact and expression of ADHD in girls and women remains sparse (Barkley, 2002; Hinshaw, 2002).
Based on results from community samples, the figures for the number of boys to girls with ADHD are presumably around 3:1 (Biederman et al., 1999). Intriguingly, by adulthood, the male/female gender ratio of ADHD is closer to 1:1 (Biederman et al., 1994; Kessler et al., 2006), which suggests that ADHD is potentially underdiagnosed in girls, and/or that girls are more likely than boys to display the inattentive presentation of ADHD, which tends to persist longer throughout development (e.g., Hart, Lahey, Loeber, Applegate, & Frick, 1995; Hinshaw et al., 2012). These observations receive support from the many examples of women who first get diagnosed as adults (Nussbaum, 2012; Quinn, 2008).
Compared with boys, girls and adults tend to show fewer symptoms of motor hyperactivity and other externalizing and disruptive behaviors, but present with more symptoms of inattention, as well as mood and anxiety disorders (Biederman et al., 1999; Faraone, Biederman, Weber, & Russell, 1998; Hinshaw, Owens, Sami, & Fargeon, 2006). As the hyperactive and interruptive behaviors often seen in boys are the symptoms that are most likely to lead to referral for evaluation and treatment of ADHD, statistics based on clinically referred samples will naturally reflect an image of ADHD as a predominantly male disorder. Hyperactive behavior is commonly judged as less socially acceptable in girls than in boys, or manifest in ways that does not make the surroundings consider them signs of ADHD, such as hyper-talkativeness, high arousal, fidgeting, flight of thoughts, internal restlessness, and emotional reactivity (Hinshaw, 2002; Nussbaum, 2012). Common symptoms of inattention in females include forgetfulness, low arousal, internalizing symptoms, daydreaming, and disorganization, while impulsivity may manifest as a tendency to interrupt others, say whatever comes to mind, act out on impulses, and suddenly change directions in life (Solden, 1995; Waite, 2010). In women, these symptoms are often interpreted as signs of emotional difficulties, disciplinary problems, and learning or attention difficulties, rather than symptoms of ADHD (Groenewald, Emond, & Sayal, 2009; Waite, 2010).
ADHD symptoms and related difficulties tend to get more salient for girls as they reach puberty, in contrast to the childhood onset of symptoms seen more often in boys. This pattern might be due to gender differences in brain maturation, hormonal influences, or an interaction between preexisting vulnerabilities and the increased demands for independence and self-structuring abilities that arise in early adolescence (Quinn, 2005; Waite, 2010).
Genes are assumed to explain up to 76% of the variability of ADHD-related symptoms in the population (Rietveld, Hudziak, Bartels, Van Beijsterveldt, & Boomsma, 2003). However, ADHD is also shaped by—and thus needs to be understood in light of—the social and cultural environments in which it exists. The prevailing social norms in a society influence the standards for what is considered appropriate behavior, and the way ADHD is portrayed and perceived by the majority of members in a society, for example, as either a “moral deficit” or a neurodevelopmental disorder, is of great importance for how individuals are met, and thus, how they experience their symptoms and impairments (Hinshaw & Scheffler, 2014). Girls are encouraged to exhibit both traditional “feminine” qualities, such as being empathic, good with relationships, nice, obedient, good mothers and home-organizers, as well as traditional “masculine” qualities, such as being assertive, competitive, academically driven, and career focused. When girls display disruptive, hyperactive, impulsive, or disorganized behavior, they are at risk of harsh social judgment because these violate the norms for feminine behavior. In an attempt to avoid social sanctions, many girls with ADHD spend excessive amounts of energy trying to hide their problems, which in turn go unrecognized by others (Quinn, 2005, 2008; Waite, 2010).
Functional Impairment and Long-Term Outcomes
The chronic and psychosocially disabling nature of ADHD significantly increases the likelihood of developing psychiatric, social, and relational problems that lasts into adulthood, especially in individuals who are left undiagnosed and untreated (Hinshaw et al., 2006; Rucklidge & Kaplan, 1997; Waite, 2010). A diagnosis of ADHD independently predicts functional impairment both in preadolescents and adults, including interpersonal difficulties, peer rejection, lowered self-esteem, academic underachievement, cognitive impairment, and occupational challenges (Biederman et al., 1999; Hinshaw, 2002; Hinshaw et al., 2006; Miller, Nigg, & Faraone, 2007; Rasmussen & Levander, 2009). Compared with other internalizing and externalizing disorders, ADHD is associated with a significantly higher risk of impairments and disabilities that affect individuals’ capacity to work in mid-adulthood, for both men and women (Mordre, Groholt, Sandstad, & Myhre, 2012).
Academic problems among individuals with ADHD are common, and often attributed to hyperactivity. However, several studies show that, by young adulthood, inattention is the strongest predictor of academic functioning and attainment, while hyperactivity, as a single factor, does not contribute significantly to academic problems (Pingault et al., 2011). Consequences of inattention and deficits in motivation often include problems with engaging in tasks that are not immediately rewarding, patterns of significant inconsistencies in results and performance over time, and underachievement. Compensatory work efforts, high IQ, and structured and supportive home and school environments can contribute to keeping ADHD hidden for years, while inconsistent performances are instead attributed to perceived personal flaws, leading to self-blame and low self-esteem (Brown, 2009; Solden, 1995; Volkow et al., 2011).
Adolescent girls with ADHD are more likely to struggle with social, attentional, and organizational difficulties; to have a poorer self-concept; to experience more psychological distress and impairment; and to report feeling less in control of their lives, compared with males with ADHD and undiagnosed females (Quinn, 2005; Rucklidge & Tannock, 2001). Hence, they are at high risk of various psychological impairments and disorders (Faraone et al., 1998; Quinn, 2005; Rucklidge & Kaplan, 1997).
Hinshaw et al. (2012) highlight the continuing severity of impairments associated with ADHD in females, as their longitudinal studies show that girls diagnosed with ADHD in childhood continue to show higher rates of widespread psychiatric symptomatology and functional impairment.
Consequences of a Late or Missed Diagnosis
Although symptoms are present in childhood, a significant proportion of women with ADHD receive their diagnosis in adulthood (Nussbaum, 2012; Young, Bramham, Gray, & Rose, 2007). When ADHD remains unidentified, the prospects of understanding one’s problems and getting access to adequate treatment options are also lost (Quinn, 2005). Over time, self-esteem and self-image are likely to suffer from repeated experiences of failure, alienation, and inadequacy. This increases the risk of developing comorbid disorders, and women not diagnosed with ADHD until adulthood are more likely to suffer from depressive symptoms, anxiety, sleep disorders, eating disorders, substance use, and low self-esteem (Hinshaw et al., 2006; Rucklidge & Kaplan, 1997; Waite, 2010). A late or missed diagnosis is also associated with difficulties in being consistent as a parent, problems in managing jobs and household, conflicts at home/school/work, reduced quality of life, and an increased risk of divorce and single parenting (Lensing, Zeiner, Sandvik, & Opjordsmoen, 2015; Nadeau & Quinn, 2002; Solden, 1995).
Stigma of ADHD
A growing body of research shows that ADHD, similar to other mental and behavioral disorders, carries a strong social stigma, and that the negative effects of stigma add significantly to the impairments caused by the disorder itself (Heflinger & Hinshaw, 2010; Mueller, Fuermaier, Koerts, & Tucha, 2012). Several variables contribute to the stigma of ADHD, including the public’s uncertainty regarding the validity and reliability of the diagnosis and negative press and attitudes toward the assessment and medical treatment of ADHD. The individual and heterogeneous course of ADHD can complicate the understanding of the disorder, and open up for interpretations of impairments as trivial or caused by a lack of willpower or resistance to conform. If not perceived as a real disorder, a diagnosis of ADHD is also less likely to give rise to empathy and understanding (Brown, 2009; Hinshaw & Scheffler, 2014; Mueller et al., 2012).
Consequences of stigma for individuals with ADHD include lowered quality of life, avoidance of diagnosis disclosure, reluctance toward pursuing a diagnosis of ADHD, treatment discontinuation, social isolation, and lowered self-esteem and self-efficacy. The feelings of inferiority, guilt, and low self-esteem that accompany many mental disorders increase vulnerability to internalization of negative public attitudes and beliefs, which commonly results in self-stigma, self-devaluation, and intropunitive emotions (Hinshaw & Stier, 2008; Mueller et al., 2012).
Study Aim
The purpose of this qualitative study was to obtain an in-depth understanding of the complex ways in which ADHD might affect the everyday lives of adult women, through exploring and illustrating how both clinical symptoms and encounters with stigma shape and translate into lived experiences. The study does not address the issue of the accuracy of the ADHD diagnosis received by the interviewees, but rather focuses on their personal perceptions and descriptions of how the ADHD diagnosis influences their everyday life. Three broad research questions guided the choice of research method and interview topics:
Method
The choice of a qualitative approach was based on the aim of investigating, describing, and communicating individuals’ shared experiences of a social phenomenon (Creswell, 2007). The methodological approach to the process of analyzing and presenting data builds on thematic analysis (Braun & Clarke, 2006). Ethical approval of the study was given in advance by the UC Berkeley Committee for Protection of Human Subjects (CPHS; Protocol 2012-10-4754).
Sampling Procedures and Description of Research Participants
A homogeneous type of purposive sampling was used to recruit participants, which means recruiting participants based on a set of predetermined requirements. Participation requirements included being female, aged 18 or older, and diagnosed with ADHD. Information about the study and an invitation to participate in an interview was emailed to potential research participants via a contact person working in a large network for adults with ADHD. Nine women made contact, of whom five decided to participate in an interview, each estimated to last between 1.5 and 2 hr.
The five participants were adult women, aged 32 to 50, all diagnosed with ADHD in adulthood by a medical professional. They volunteered for the study because of their personal interest in and commitment to the topic. They all have a Higher University Degree, are married/in a relationship, have one or more close relatives with ADHD, and are full-time employees or homemakers. Three of the women are mothers, and have children diagnosed with ADHD. Identifiable information has been removed from the data material, names are replaced by pseudonyms, and age is reported as either 32 to 40 years (Amber, Christine, Emily), or 41 to 50 years (Beth, Debra). The participants signed informed consent forms in advance of their interviews, after having been informed in detail about the aims of the study, measures to ensure anonymity, and their role and rights as research participants. All interviews took place in the United States between January and February 2013, and were performed, digitally recorded, transcribed, and analyzed by the first author.
Procedures
Data were collected using semistructured in-depth interviews, a method described as optimal for collecting data on individuals’ personal histories, perspectives, and experiences (Creswell, 2007). The participants were encouraged to elaborate on topics they found particularly relevant, while remaining within the thematic limits in the interview protocol.
Examples of topics explored in the interviews include the following: which factors and events led to diagnosis, what the most prominent symptoms are today, how these manifest, and what challenges they result in. Issues associated with the relationship(s) between ADHD (symptoms), motherhood, and gender norms/expectations were explored, and the participants were asked about experiences and consequences of stigma. Finally, the participants were asked about helpful treatment and coping strategies, personal strengths, and the impact of ADHD and stigma on social, academic, and occupational functioning, and self-esteem.
Data Analysis
The interviews were analyzed in accordance with thematic analysis (Braun & Clarke, 2006; Vaismoradi, Turunen, & Bondas, 2013). The initial coding identified codes and categories in the data material, as such data reduction aided an understanding of the meaning in the complex and comprehensive data material. Reading and grouping the data material horizontally enabled comparisons and search for thematic patterns. This analytical approach represents a “mixed-methods” combination of deductive and inductive strategies, known as abduction, because the data collection followed predefined research objectives (deductive), while detailed reading and interpretation of the raw data material guided the selection of themes and codes (inductive).
More than 40 codes emerged from the first set of data analysis, several of which were later grouped together under overarching themes, based on co-occurrence and similar meaning content. The five main themes and their subthemes are described in Table 1.
Main Themes and Defining Subthemes.
Note. ADHD = attention deficit hyperactivity disorder.
Each participant was asked to evaluate and give feedback on the quotes from their respective interview. This validation strategy is referred to as member-checking, and helps increase the validity and trustworthiness of the data material from the participants’ perspective (Krefting, 1991).
Results and Discussion
The five core themes resulting from the data analysis guide the presentation of findings, and 10 separate headings based on the codes from the final coding framework further specify the meaning content within each section (see Table 1). The first two main themes deal with the women’s experiences of living with unidentified ADHD from childhood into adulthood, the process of getting diagnosed, and ADHD-related symptoms and difficulties. Themes 3 and 4 deal with the impact of social factors on the experience of living with ADHD. Finally, in Theme 5, the focus is on perceptions of self, as well as mastery, coping, and treatment strategies.
From Unidentified Childhood ADHD to Adult Diagnosis
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.”
Present Main Symptoms and Challenges
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.
Motherhood and Gender-Specific Issues
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.
Stigma of ADHD: “People Think It’s a Fake Disease”
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)
Managing ADHD Symptoms and Identifying Strengths
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.
Summary and Concluding Remarks
The interviewees appear intelligent, resilient, determined and resourceful, and are highly educated and employed, despite having faced persistent difficulties and impairment due to their ADHD. The women’s stories show that it is possible to overcome adversity and live meaningful lives with a diagnosis of ADHD, but they also shed light on how stigmatization, lack of knowledge, and internalization of problems cause additional impairment.
Today, indecisiveness and disorganization make it hard to build and maintain structure and routines, resulting in unpredictability on a daily basis and, ultimately, in worries and anxiety (see also Solden, 1995). Due to the increasing complexity of responsibilities and organizational demands from work and family-life, ADHD symptoms and their consequences have become more salient in adulthood, and, similarly, several other studies show that ADHD symptoms continue to cause significant psychological, vocational, and social impairment into adulthood (Lensing et al., 2015; Quinn, 2005; Rasmussen & Levander, 2009; Waite, 2010).
The comorbid problems emphasized by the participants are mainly internalizing and seem related to inattention and disorganization; several describe high levels of psychological distress and frequently feel overwhelmed, lacking control of their lives. Because of similar findings, Rucklidge and Tannock (2001) have stressed the importance of addressing and targeting secondary psychological effects more systematically in females with ADHD.
Many of the symptoms and difficulties the women experience are consistent with executive dysfunction and poor inhibitory control (see, for example, Barkley, 1997; Brown, 2009; Nigg et al., 2005), and with dysfunction of the motivation and reward circuits in the brain (Volkow et al., 2011). Procrastination and motivational difficulties hinder the women from taking full advantage of their academic and occupational skills, regardless of, for example, their high intelligence, because “there’s no point in being smart if you can’t work like a worker bee, like other people do.”
The participants seldom refer to their behaviors as hyperactive or impulsive. However, they describe impatience, hyper-talkativeness, emotional dysregulation, sudden directional changes in life, and a tendency to interrupt others or “talk before thinking”—all common symptoms of impulsivity and hyperactivity in women with ADHD (Solden, 1995; Waite, 2010).
The participants experience that ADHD symptoms are in conflict with gender expectations, and describe motherhood as challenging. Some of the women report feelings of guilt and inadequacy as mothers, worry about the effects of their ADHD on their parenting skills, and are concerned that their children (with ADHD) will struggle academically and with poor self-esteem and stigma.
After having experienced lack of control and mastery, as well as histories of self-blame and self-criticism, several of the participants struggle with deeply embedded feelings of lowered self-esteem and self-efficacy. Rucklidge and Kaplan (1997) highlight the importance of addressing and targeting ADHD symptoms at an early age to prevent self-esteem issues from developing.
The participants describe stigma of ADHD as common and burdensome. ADHD is commonly referred to as an excuse for being lazy, immature, and unwilling to conform, and as a fake or moral problem (Hinshaw & Scheffler, 2014; Mueller et al., 2012). Stigma makes it harder to get the severity of struggles understood and recognized by others, resulting in reluctance toward diagnosis disclosure. Some are concerned that such disclosure would result in negative sanctions at work. Moreover, the risk of self-stigma is likely to be high among women who already struggle with negative self-perceptions that are very similar to common stereotypes about ADHD as a “disease of laziness, low intelligence and lack of willpower” (Corrigan & Watson, 2002; Hinshaw & Stier, 2008). Two recent studies have tested the effects of cognitive behavioral therapy-based psychoeducational groups on reducing stigma and prejudice toward ADHD; for adults with ADHD and their significant others (Hirvikoski, Waaler, Lindström, Bölte, & Jokinen, 2015), and for children with ADHD and their peers, parents, and teachers (Nussey, Pistrang, & Murphy, 2013). The results are promising, and it appears that providing educational information that is sufficiently detailed can improve well-being of and alter attitudes toward individuals with ADHD.
ADHD is associated with a high risk of academic failure, unemployment, comorbid disorders, substance abuse, self-harm, social impairment, suicidal ideation, and suicide (Biederman et al., 2006; Hinshaw et al., 2012; Mordre et al., 2012). Although based on a small sample of women, the findings from this study show that positive adjustment is possible in spite of a diagnosis of ADHD. Most of the participants have had academic difficulties, yet all have managed to graduate with a higher university degree and to find employment, and none have struggled with substance abuse. Among the factors that kept the women from trying drugs were fear of losing self-control, of “frying brain cells,” and of breaking social norms regarding alcohol and drug use. Symptoms of anxiety and depression have been identified as protective factors against substance abuse, which might apply to the women in this study (Pingault et al., 2013). Although none of them are or have been clinically diagnosed with comorbid psychiatric disorders, several describe prior or present anxiousness.
Implications and Directions for Future Research
It is essential to recognize and target the significant challenges and consequences associated with a diagnosis of ADHD in women (Miller et al., 2007; Nadeau & Quinn, 2002; Rasmussen & Levander, 2009; Waite, 2010). Although the women in this study can point to a number of accomplishments, they have also repeatedly experienced fluctuating levels of performance and overall functioning. It is possible that an early diagnosis, accompanied by adequate treatment interventions, could have led to better symptom management and self-understanding. An early diagnosis and pharmacological treatment also have a positive impact on long-term prognosis and outcomes, as well as quality of life, in adults with ADHD (Agarwal et al., 2012; Mordre et al., 2012). Experiences of academic mastery in childhood can promote self-perceived scholastic competence, which to a greater degree than actual academic achievement predicts lower levels of adolescent internalizing behavior in girls with ADHD (Mikami & Hinshaw, 2006).
However, the negative effects of stigma of ADHD complicate the discussion about the advantages of an early diagnosis. Although ADHD needs to be recognized and treated as a serious disorder, the often unbalanced or incomplete understanding of the disorder among health care professionals, as well as nonprofessionals, including low expectations of improvement and definitions of ADHD as biologically “fixed,” might increase stigma and lead to perceptions of the disorder as unmodifiable or equal to lost opportunities. This can leave individuals feeling even more discouraged and helpless than before (Heflinger & Hinshaw, 2010; Kvaale, Haslam, & Gottdiener, 2013). The impact of stigma is an important aspect of the understanding of the implications of living with ADHD. The ways in which ADHD is portrayed in the media and understood by professionals and the public, greatly influence how the women in this study are affected by their ADHD and how they perceive themselves as well as the diagnosis.
Of special importance in future research is the topic of ADHD and motherhood. Moreover, the many examples of success and achievements among the women in this study encourage further examination of factors that can contribute to positive outcomes for women with ADHD. More tools and strategies for symptom management are needed, as well as strategies for promoting self-esteem and self-efficacy, for women with ADHD. We hope that the findings from this study, especially those concerning gender-specific issues, can inform future, large-scale studies of ADHD in women.
Strengths and Limitations
Among the strengths of this study, are the rich and complex personal accounts that resulted from the interviews. In addition to providing deep insight into women’s experiences of living with ADHD, the findings can inform and inspire further research on gender-specific and psychosocial issues associated with ADHD.
There are also some limitations to this study. First, the small sample-size and the qualitative design call for cautiousness in the interpretation and transferability of findings. The transferability of qualitative research findings involves the extent to which the research findings can be applied to other comparable settings. All the interviewees in this study were diagnosed as adults, and the experiences of these women, who grew up without any identified cause or explanation for their problems or access to any treatment strategies, might differ from the experiences of women who were diagnosed with ADHD in childhood or adolescence. Moreover, the participants’ high educational levels, occupational status, and few comorbid disorders stand in contrast to more distressing results from other similar studies, and this may have implications for the transferability of the findings. The current findings and experiences might, therefore, apply more specifically to other women diagnosed with ADHD as adults, who are in similar situations and above the age of 30, while the transferability of findings to, for instance, clinically referred samples might be more uncertain. However, this group of unique women also highlights the diversity of the ADHD expression.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.