With perimenopause as well as ADHD, it’s incredibly difficult trying to get help in a underfunded, patriarchal health system, especially with the conflicting views and outdated information among health professionals. In Part Two of a two-part story (find part one here), we speak to one woman who had to advocate hard for herself.
Christine*, a 45-year-old from Wellington, was diagnosed with Attention Deficit Hyperactivity Disorder [ADHD] last year.
ADHD involves deficits in self-regulation, such as problems with task initiation, sustained attention and time management. “I have real trouble starting tasks,” Christine says. “It takes forever to get going. And when I am going, I constantly want to stop. It’s not so much that I get distracted – it’s that I’m constantly looking for distractions.”
“With ADHD, you get cognitive fatigue because you’re over-stimulated and can’t direct your attention where it needs to go.”
Christine had always vaguely wondered if there was something ‘wrong’ with her. “Things that other people seemingly found easy, I found hard. As soon as hormones kicked in and I started getting periods, it was a struggle from there, particularly meeting deadlines at university. Then, when I started my first job, it all felt overwhelming.” And after having children – one of whom barely slept – Christine could no longer regularly use coping techniques like getting enough sleep, enough exercise, and quiet time away from everything.
Then she became friends with someone of a similar age who had been diagnosed with ADHD as a young adult. “When I talked about things I experienced, she’d say ‘that’s an ADHD thing’ and I’d say ‘isn’t everyone like that?’. I mentioned to her that, on a walk, I was reading every sign and every number on the letterboxes, and she said ‘welcome to ADHD!’.”
“The penny dropped. I went onto the ADHD NZ website, did their questionnaire and consistently scored high on the likelihood of having ADHD, even when I answered conservatively.”
ADHD can exact a greater toll on women than on men – and ADHD symptoms can become more pronounced with hormone changes in your 40s and 50s. Christine thinks that happened to her.
“I started having extreme cognitive fatigue. I was so tired I could barely get out of bed and, by the end of the day, I was so exhausted I could barely think. I couldn’t cope with my kids making noises, any repetitive noises, anything really. Everything was falling apart.”
But she couldn’t get help.
“There was a huge waitlist to see a psychiatrist in the public and private system.” So she did her own research, discovering that a medication that’s not a stimulant can be prescribed without a formal ADHD diagnosis. But her GP wouldn’t prescribe it. Christine had to ask a psychiatrist (someone she was yet to see) to convince her GP to finally prescribe the medication. “It helped with the cognitive fatigue, but I still got tired in the afternoons and still struggled with initiation of tasks.”
It took a year to see a psychiatrist through the public system. “After a short chat they dismissed me outright without even doing any questionnaires. It was demeaning. I felt they based their decision on the fact that I arrived at the appointment early. But that’s what ADHD people do – if there’s something really important, your whole day is based around that.”
Could they have thought she was ‘too functional’? “Maybe. I managed to get a degree, but at extreme cost to my mental health. I’ve stuck at my professional career, but have burned out numerous times.”
“When I got dismissed by the public system, it took me a year-and-a-half to pluck up the courage to try to find a private psychiatrist.” None were accepting new patients. A year later, she found a waitlist spot. There was another year-and-a-half’s wait. Finally, an appointment. A private psychiatrist diagnosed her with ADHD and switched her from the medication that had helped somewhat to a stimulant that worked better.
“I was relieved that it was a confirmation. For three years, my fear had been, ‘if I don’t get a diagnosis, what then? What if I’m just crap? What if I’m just a useless human?’.”
Then, perimenopause came calling. The intersection of ADHD and perimenopause can present significant cognitive and emotional challenges.
“I’d get this enormous energy dip at about 2pm, and it would last until maybe 9pm. I was either bedridden, or dragging myself through doing things like cooking dinner.”
“I had brain fog – not being able to think properly or access words.”Christine also gained unexplained weight, and experienced some insomnia and night sweats. “I thought is it Long COVID? Chronic fatigue? Part of my ADHD? Perimenopause?.” Researching it, she strongly suspected the latter.
Christine saw her GP. “She said I wasn’t a candidate for MHT [menopausal hormone therapy] because the pill had affected me negatively.” Christine didn’t think that was correct, and went back again. “Then my GP didn’t want to prescribe MHT until I’d had a mammogram. The third time I asked, she said no again, because I’d already started on ADHD medication, and she didn’t want me on ‘too many things at once’. So I was forced to pay for a menopause specialist.” The specialist prescribed MHT, which helped.
But, frustratingly, opinions collided again.
“The psychiatrist treating my ADHD didn’t like that I was on menopause medication, and threatened to stop my ADHD medication. TBH, I don’t know what she was thinking. She said something about the benefits I was experiencing likely being from the MHT rather than the ADHD medication. But she said that directly after telling me I couldn’t be perimenopausal, because my periods are still regular – even though I’m 45 when many women are experiencing perimenopause!” (Many women experience perimenopausal symptoms when their periods are still regular.) “I told her, ‘you’re not hearing me. I’m saying that the two medications together are working’. The menopause medication helped me enormously. Prior to that, the ADHD medication wasn’t working as well, because my oestrogen was going up and down.”
Christine’s menopause specialist wrote to her psychiatrist, “saying ‘why would you stop the ADHD medication when the patient is feeling better?’.” Her psychiatrist agreed to keep prescribing it.
“But then the menopause specialist also expressed dismay that I hadn’t seen her first, because she thought many of my symptoms were probably down to perimenopause not ADHD. But perimenopause made the ADHD symptoms worse! So even between doctors, psychiatrists, and menopause specialists, there’s often no agreement about what’s going on.”
However, Christine is finally on the right combination of medications. “I never used to take any medications – I’d try not to even take paracetamol. Now I take many medications but I’m functioning better than ever. Medications are here for a reason. Why is there this ‘stiff upper lip’ attitude of pushing through without them?”
Something Christine finds very stressful is that she can’t get a backup of medication in case something unexpected happens – for instance, some medication recently became unavailable here. “So, you might have seven days to sort out a new prescription from a busy psychiatrist who might be away.” If the psychiatrist isn’t available, Christine’s GP won’t help. “You also can’t order repeats from a pharmacy until seven days before they’re due. There’s this fear you’ll be seen as a drug addict if you ask for medication early or if something else like a dose changes.”
Christine thinks we should talk more openly about ADHD and perimenopause. “I made a social-media post about my morning practice – how I have to listen to silly music to do yoga because that produces the dopamine I need to be motivated. If I do something silly or impulsive in front of clients, I tell them it’s because of my ADHD.”
“I tell people about ADHD openly. Because in some respects I’m proof that someone with ADHD can be functional. Despite tough times, I’ve stuck with my career and my partner. I’ve managed to buy a house. So I’ve managed, but many people are finding things so much harder and need a lot more support.” Support they’re unlikely to be getting in our health system – especially if they don’t know how to advocate for themselves, or can’t afford to go private.
Christine feels there is still a general brushing-off by health professionals of women’s symptoms. “It’s rooted in the patriarchal health system and the idea of women’s hysteria. As women, we shouldn’t have to educate health professionals, but there’s a lot of misinformation. So there’s a hurdle not only to navigate the medical system, but an inner hurdle, because there’s always that self-questioning of ‘am I just being over-dramatic?’.”
She advises anyone in similar situations to educate yourself and advocate for yourself. “Don’t stop until you get help. Try and see a specialist or someone with up-to-date knowledge. Don’t try and get through without medication, because there’s no need to suffer. And know that it can get better.”
