CAIRO – 8 March 2023: A woman with Attention Deficit and Hyperactivity Disorder (ADHD) will probably slip through the cracks of family, school, and even medical practitioners. As a girl, she often is not hyperactive, and as an adult, her struggles are misinterpreted because some people believe ADHD does not exist or does not persist into adulthood. All that leaves those women with deep-seated shame and guilt.
Growing up with ADHD is confusing enough, especially since the girls do not know why they are different. They grow into the typical responsibilities of women, and they often find themselves unable to function.
“Motherhood and routine are hard with ADHD. I wonder how [my daughter] is going to learn certain skills if I cannot acquire them myself. I always feel guilty when I think about my daughter; I want her to grow up in a clean, healthy environment,” says Umm Mariam, 28, who was only diagnosed last year.
Umm Mariam, who prefers to be identified by her daughter’s name in this article, suspects her daughter inherited the condition, but when Mariam wants to spend time with her mother, Umm Mariam tries to divert her attention to something else.
“My head is so noisy; I can barely handle myself… I constantly have the fear that I cannot be a good mom… I believe she deserves a better mother.”
Umm Mariam often goes down this spiral of self-blame and anxiety, she tells Egypt Today. She thinks of her daughter going to school and needing a study schedule, but she fears she will not be able to organize her own thoughts, time, and energy into the schedule of the needs of her daughter, whereas she never committed to a schedule of her own in the first place.
Women and the most boring of things
Women are typically expected to handle routine and uninteresting tasks well. That may not be the case with every women, but for a woman with ADHD, it is a serious challenge.
Madiha Kishk, an ADHD influencer, believes that responsibilities traditionally assigned to married women are more difficult for them to manage than their neurotypical counterparts.
Many married women with ADHD perceive themselves as bad wives or bad mothers because, no matter how hard they may try, it is so hard to live up to the standards the neurotypical society puts upon them, Kishk tells Egypt Today.
Neurodivergent people with autism or ADHD are at the end of the day a minority in a world, as only expected, built around the neurotypical majority.
A large number of women with ADHD only discover their disorder after marriage or motherhood, when consistency, routine, and tedious demands are too overwhelming for them to handle.
That, at least, was the case with Umm Mariam.
Despite almost 28 years of having undiagnosed ADHD, Umm Mariam is one of the lucky women with the condition. Other women have stayed undiagnosed for much longer or were never diagnosed at all.
A story of late diagnosis: validation and what ifs
When an adult is diagnosed with ADHD later in life, it is often validating but also, for a while, depressing. They speculate what could have been of their lives had they been given the support they needed since childhood.
Kishk, 33, wonders if she could have performed better in school and university, had more friends, achieved more goals, gotten less taken advantage of, and ultimately been capable of showing her potential.
Kishk shared with Egypt Today a vivid memory of the impact of her ADHD in her college years. A professor told her she was a bright student and gave her the task of submitting a final project on which many of her colleagues’ scores depended. She had only been diagnosed with an anxiety disorder at the time and was medicated for depression.
“I tried so hard day after day to start, continue, and finish finalizing that project. The deadline was looming…”
“I think it was hours before the deadline when I emailed my professor to apologize for not being able to submit the project. I told him to please penalty my grades and no one else’s since it was not their fault. I hated myself so much that day. It was then that my social isolation became dramatically worse,” says Kishk.
Chronic procrastination and tardiness are a hallmark of ADHD. It is a multifactorial symptom that includes forgetfulness, unawareness of the passage of time (time blindness), and waiting for dopamine, a neurotransmitter that is insufficient in ADHD brains, to kick in to begin a task. It is not unusual for people with ADHD to sit on a project thinking they can do it and end up canceling in the last minute instead of earlier and before the situation gets worse.
“I was too ashamed and embarrassed to even show my face to my colleagues. I cannot speak to their reactions, as I do not remember anyone tried to reach out to me, but I made sure I was not available enough to find out. My professor, however, responded to my email with far more grace than I anticipated, accepted my apology and understandably, I failed that course,” Kish recalls, adding that she eventually dropped out of university.
A working man “has done enough”
For her part, Umm Mariam has accepted her late diagnosis and tries to manage it, but she admits she would undo the marriage and the motherhood if she could.
Tidying up is difficult for her. To find enough willpower to do it, she needs someone to keep her company and talk to her while she does. It is a coping mechanism known among the community of ADHD as body doubling.
Having her life closely connected to her partner’s and her child’s makes the management of her symptoms harder. While she feels guilty around her daughter, she has the fear of judgement around her partner.
“Expectations of women are so high in our society compared to men. If a man goes to work, he has done enough. That man may be a husband, father, or a brother; they have done enough by just doing one job. Women, on the other hand, are expected to do more tasks like tidying up, cooking, going grocery shopping, communicating, etc,” she says.
Males in a family can have their own space and separate themselves from everyone, but women cannot, she adds.
“I feel blamed by everyone around me, parents, siblings, friends. Maybe the expectations are normal for neurotypicals, but ADHD makes many tasks difficult. It is hard to remember to make phone calls as well as it is hard to actually pick up the phone and make them” Umm Mariam continues.
Awareness and Arabic
Baby steps have been taken in T.V. as the drama series Khalli Balak min Zizi (Watch out for Zizi), about a woman with ADHD was broadcast in 2021, creating a hype among the millions who watched it. Social media influencers also began to reveal they have the condition, such as Jana Diab, the daughter of Egyptian superstar Amr Diab.
However, when it comes to social media, a one-year old video by Youtuber Ahmed Behiry telling his story with ADHD is the one that resonated with many people with undiagnosed ADHD. Even Behiry was only diagnosed following his son.
Meanwhile, Kishk set up accounts with the name ADHD in MENA on several social media platforms in 2021 to raise awareness on adult ADHD.
“Because of what happened to me as someone who was diagnosed late in their life, I do not wish anyone else to go through what I did. I lived with intense shame and confusion, I was haunted by the criticism of others, and I was always asking myself why I could not ‘just do it’ like everyone else,” Kish tells Egypt Today.
“It seemed that my brain would often not cooperate. Zoning out, being forgetful, getting lost in hyperfixations yet failing to persevere in almost anything. It affected my education, personal achievements, and relationships, and I burned out hard. I socially isolated myself. I was on the verge of suicide. That is how bad it got,” Kishk says.
After her diagnosis, and, more importantly, accepting it, she decided to create content sharing her story and even appeared on T.V. to fight stigma and ignorance.
Both Kishk and Umm Mariam are fluent in English; hence have access to an abundance of ADHD content and material. Others are limited to scarce Arabic content and books on the subject. When found, the books are usually about children and are directed at medical professionals. A few speak to teachers and families, and they are also about children.
One more downside is that many of the books are hardly ADHD friendly. Authors often forget that ADHD is hereditary and the “families” that may be reading their text may very well also have adult ADHD and may have a hard time reading long books with chunky chapters and paragraphs and few sub-headings.
Self-diagnosis and social media
The lack of awareness on ADHD in adult women means that they need a community that speaks to the unique impact of the disorder on a person with the responsibilities, expectations, and hormonal presentations of women. Naturally, ADHD manifests differently when in contact with the traditional responsibilities of men.
The relevance a woman with undiagnosed ADHD may find in the content of a diagnosed woman may mean more confidence when the former seeks a diagnosis. Sadly, they are often misdiagnosed as one of the ADHD comorbidities, such as depression or anxiety, leaving the root cause undetected and untreated.
Although improving, awareness on ADHD even amongst clinicians in Egypt is “not ideal,” Kishk says, adding that she was personally told by a doctor that she could not have ADHD because she is an adult female.
Self-diagnosis in a prelude to a professional diagnosis is one way to help women who are met with either lack of awareness or even resistance amongst doctors.
A platform for women with ADHD in Egypt is still lacking. What is also lacking is Egyptian psychiatrists making videos and reels on mental health. Sometimes a psychiatrist will explain ADHD symptoms so precisely in a way someone with the disorder cannot, ringing many bells in the head of an undiagnosed person watching and prompting them to visit a professional.
The severe under-diagnosis may mean less women would make Arabic content about the disorder. However, the increasing awareness on social media may lead to more self and professional diagnosis, and one day a woman with ADHD will do just that.