Ed. note: Some names have been changed at the request of the carers and families interviewed.
When Sally, 45, gets her period, she says, “Ergh, yuk, me on.” Sally has the mental age of a 2-year-old and lives in a care home in the north of England. Her speech is not very developed and she is only understood by a few close family members and her full-time carers. Sally’s older sister, Elizabeth, who often ‘translates’ for Sally explains that “Sally got her period when she was 15. She kept saying ‘all blood’, ‘all blood’ and crying. I explained that ‘this is what happens to ladies – every month, you have some blood.’ Sally has no idea about the correlation between periods and fertility, but she knows it’s a thing that happens to women.”
Sally is obsessed with periods. She asks every woman she meets, including me, “Are you on?” When I say “No” she asks, “When?” I tell her “Next week” and she says, “Me too, me too.” She repeats this question a lot. “Bad tummy?” she asks. “Yes, sometimes,” I reply. “Bad head?” she asks. “Yes, sometimes,” I reply. “Me too,” she says. I ask Elizabeth why Sally is so interested in periods. “I think because it makes her feel like a woman,” Elizabeth says, “it makes her feel she’s ‘normal’ because she, like every ‘normal’ woman, has a period. So she likes that. She likes to feel like everybody else, so she talks about it all the time. She doesn’t have many common bonds with other women, but she does when it comes to her period.”
Though she loves to talk about it, Sally has had some very traumatic experiences with menstruating. “She has very heavy periods, I think because of the medication she is on, and she often doesn’t realise when she needs to change her sanitary towel – she can’t use tampons as they are too difficult,” Elizabeth explains. “Her periods are a little erratic at the moment, and there was an incident recently where she bled heavily onto her clothes on a day out shopping. She became very distressed and said 'not me, not me' because she felt it was somehow her fault that she hadn’t realised her period had come. I had to take her into the disabled toilet of the shopping centre while I quickly went to buy her some more knickers and a new skirt in order that she could continue the day out.”
It’s a situation that, actually, a lot of women will be able to relate to. Most women have, on more than one occasion, got their period unexpectedly, at a highly inconvenient time, and panicked about it. I’ve bled through my jeans more than once on a night out or during my working day, stuffing tissues in my pants in an attempt to keep calm and carry on. In the end, these become funny anecdotes – well, anecdotes. But for women with severe learning disabilities, like Sally, it’s not so easy to laugh off and can be extremely distressing.
Lara, 31, has Down’s syndrome and autism. She has the mental age of a 5-year-old. “She got her period when she was 16,” her mum, Jenny, tells me. “It’s a very difficult thing for her to communicate. She goes very quiet and becomes embarrassed. We were out for dinner recently and all of a sudden Lara went very quiet and started crying. She put her head on my shoulder. I asked what was wrong but she wouldn’t say. Then she went to the toilet and she’d been gone for a while, so I went to check on her. She had come on her period and was in a lot of pain but was too embarrassed to say.”
Like Sally, Lara uses sanitary towels. “If she’s at home, she knows what to do and how to put on a sanitary towel,” Jenny says. “At her day centre – which is a centre for people with autism, as Lara also has autism – they do life skills lessons, where they write stories and draw pictures about getting your period, so she can follow what’s happening.”
When you stop to think about it, there are a lot of steps involved in managing a period. Most women know, roughly, when they’ll get it. We pop to the shop and stock up on tampons or panty liners or sanitary towels – whatever our preferred method is – insert the tampon, and either flush the old one down the loo, or wrap up our sanitary towel neatly in the wrapper of the new one and put it in the special period bin. Depending on how heavy it is, we go to the toilet and repeat this process about five times a day. We might decide not to wear our best knickers during the period. We might also take ibuprofen. We might also be in a bad mood. Commonly, it's over in five days, and then we stop packing sanitary supplies in our handbags for work. It is, usually, little more than a monthly inconvenience in our lives.
Now imagine dealing with all that when you were 2 or 4 or 5 years old. In UK primary schools, teachers give period lessons where students are given tampons, sanitary towels and a small lecture about why and when girls bleed, and what to do about it. The lesson is a bit different for girls with learning disabilities. For example, it's not just a one-off lesson but often a big part of the girls' education. Carers and teachers often write stories or draw pictures to describe the process. This example, posted on The Women’s International Perspective, outlines the way one girl with autism, Katie, started to learn about periods – through a story written by her teacher.
“I’m getting older. I’m getting bigger. My body is changing.
Sometimes there will be blood coming from my body. This is okay. It will not hurt.
I will wear a sanitary napkin.
My stomach might be upset. I might be sad. If this happens I can go lie down…”
Katie started learning this story when she was nine. “Earlier than most girls tend to need to learn the skill because Katie’s rate of acquisition is so slow,” the article explains. Katie’s teacher, Jessica, continues: “We have her practice changing her sanitary napkin sometimes eight times a day. It’s maybe a waste of resources but it’s too important not to.”
Another thing all women can relate to, is when your cycle messes up. You get out of sync – you might bleed for three times the normal length due to a change in hormones or contraceptive pill, or you might stop having periods due to weight loss, or increased flow due to weight gain. Lara’s family didn’t realise she had been experiencing spotting for two months. “At the moment she’s being investigated,” her mum tells me, “Normally she’s very regular but recently she’s been having spotting, which she was hiding from me. I only found out because we’d run out of toilet roll one day and Lara called out to tell me that from the bathroom, so I went in to give her some more and noticed she was wearing a pad, despite not being on her period. She had realised that there was blood and knew to put a pad in, but was embarrassed to tell me as she was confused by it.”
Perhaps the most challenging thing, for all girls, is that with periods comes puberty and an increase in oestrogen. “The start of your period is one of the key factors in puberty for a girl. You start to ovulate because of the change in the natural hormones in your body, and sexual feelings are a part of that,” explains Dr. Stephen, a general practitioner at St Mark's Medical Centre in London. While blood is a physical symptom of 'becoming a woman', there’s a lot more to it than that, which can be especially challenging for girls with learning or developmental disabilities. While Lara has the mental age of a 4 or 5-year-old, she also has to contend with being a 31-year-old woman, and the emotions that that brings.
Lara’s sister, Steph, is five years younger than her and works as a nurse in west London, and lives with her fiancé. “If I kiss him in front of Lara, she laughs and gets embarrassed; it’s a bit like how kids act in the playground. She is aware of sexuality and feelings of attraction, but she’s still very childlike about it.” Steph explains that, though Lara has a young mental age, she is aware that ‘normal’ 31-year-old women live very different lives from her. “What she really struggles with is seeing me, her younger sister, and seeing that I’m living the way you’re ‘supposed to live’ – or at least as she perceives it. Lara struggles with not being able to live that life. There have been times where she gets upset and says ‘I want a boyfriend, I want to go to work.’ She envies and longs for what she perceives as ‘a normal life’, and what she thinks she should be doing as a 31-year-old woman.”
It’s a similar situation for Sally. Her sister, Elizabeth, explains that Sally’s carers encourage her to have ‘relationships’ or ’friendships’ with men who have similar mental ages to her. “Of course people with learning disabilities have sexual feelings,” Elizabeth says, "as they mature as women and men, and so expressing these feelings, in a safe environment, is encouraged, and rightly so. Sally has a ‘boyfriend’, who she holds hands with and has supervised dates with. Doctors and carers do an adult safeguarding assessment to decide how far the person with learning disabilities is allowed to go in a relationship. You have to have a legal mental age, etc.”
Apart from periods, the other thing Sally (45) is obsessed with, is marriage. The only other questions she asks me, apart from if I’m on my period, are “You got a man?” and “You got a ring?” pointing to my ring finger. “When our dad – who was Sally’s primary carer – died, one of the things she found very upsetting was the idea that he wouldn’t be able to walk her down the aisle on her wedding day,” Elizabeth explains. “And she still says, ‘Oh I’m going to live in a big house and I’m going to get married.’” The other female residents in Sally’s home talk similarly about their periods, and the future, and their plans to marry. “With learning disabilities like Sally’s, the concept of time is not as developed, so this ‘future promise’ of marriage is very important to her. Having a ‘boyfriend’ helps her to have an identity, and helps her to feel like a ‘normal woman’ – as she sees it – just like having a period."
All women experience different symptoms and severities surrounding their periods, and it's no different for women with learning disabilities. It goes without saying that the spectrum of learning disabilities is as big and complex as all human biology and emotion, and so the education, practice and understanding of menstruation and all that it brings, should be tailored to the individual. It is still something that unites, though. Going through puberty and experiencing the depth of emotions that female hormones bring is all part of being a woman, and it's something we can share – a common bond.