“We’re their voices.”

Caregiver perspectives on managing menstruation for people living with severe disabilities

By Nicole Casanova for the Menstrual Health Hub

Illustrated image of a young girl in a wheelchair with 5 diverse women surrounding and supporting her. Image by MARIEL ELOPRE.

Puberty can be brutal.

For many, puberty is a word that calls colorful memories to mind — a highlight reel of the most challenging, confusing, and often embarrassing phase of every young adult’s life. With the biological changes that allow for reproduction, young people face the burden of adjusting to an onslaught of physical, mental and emotional changes.

For those living with a disability these challenges are often magnified as they navigate the double stigma of living in a body that is both menstruating and disabled.

Evidence to-date suggests that young people who live with disabilities face a number of particular considerations when managing menstruation, and they are often overlooked in discussions around menstrual equity and dignity.

Today we will explore some of these experiences through the stories of Mary and Michele (full interview here), two women based in the US who are preparing to care for Aubrie, a young woman with a severe neurodevelopmental disability, as she approaches menarche.

Image: Aperson standing on the beach with a starfish in their hands. The International Federation for CDKL5 Research (IFCR) has adopted the starfish as their symbol. Photo by Seyedeh Hamideh Kazemi on Unsplash

“Aubrie has a gene mutation called CDKL5, which is a mutation in the gene that impacts how you learn. Her growth is very delayed,” Mary tells us. As Aubrie’s mother, Mary has become an expert in this disorder that many have never heard of. CDKL5 deficiency disorder is characterized by early onset seizures and severe neurodevelopmental impairment, and although rare, it is one of the most common forms of genetic epilepsy.

Mary and Michele, Aubrie’s full-time caregiver, are anxiously anticipating the arrival of Aubrie’s first period, and want to be prepared. Caregivers are instrumental in managing the young person’s comfort and safety, and play a crucial role in managing menstruation. From changing used period products to monitoring symptoms, puberty, which is normally an individual experience, very much becomes a team effort.

Michele, who has been a certified Home Health Aide for 10 years, tells us how nervous she was the first time she had to change one of her clients’ soiled pads.

“I didn’t want her to be embarrassed or uncomfortable in any way,” she says, having had no formal training on menstrual hygiene management (it’s not offered as part of Health Aide certification).

“I had never changed another person’s menstrual products before, but after you do it once it’s no big deal.”

Michele’s experience is quite common, as many professional caregivers and family caregivers navigate their day-to-day period management responsibilities without any formal guidance or support.

Preserving the dignity and comfort of the menstruating person is of the utmost concern to caregivers.

In order to accomplish this, many parents of children living with disabilities explore options with their child’s medical care team to shorten her cycle or achieve amenorrhea.

For Aubrie, Mary decided that medical intervention would not be necessary.

“I don’t see a need to try to get rid of her period or shorten it or anything like that,” she says. “I’m going to let Aubrie be Aubrie and not put unnatural things into her body if I don’t have to.”

The decision on whether to suppress menstruation is a deeply complex and personal matter discussed among the disabled person, her family, and her physicians, and depends on a variety of factors including geographic location, income and individual values.

Image: A young woman in a wheelchair looks out a window. Image by Getty Images.

The most extensive medical intervention to manipulate menstruation, known as the Ashley Treatment, remains ethically controversial since it was first made public in 2006.

The procedure includes giving high-dose estrogen treatments to inhibit growth, as well as removing the patient’s uterus and breast buds. By remaining small in size, parents and guardians may continue lifting, bathing, and integrating their child into life’s daily activities. Many disability rights advocates decry the procedure as a violation of the disabled person’s right to autonomy via forced sterilization, however others view the procedure as a means to mitigate pain and suffering by potentially even enhancing the disabled person’s quality of life.

To provide guidance to caregivers of children with disabilities through their consideration of menstrual suppression options, the American Council of OBGYNs published their Committee Opinion #668, which prioritizes dignity and respect toward the patient. A continued dialogue regarding the interpretation of these guidelines will be significant as the movement for menstrual equity and disability rights advocacy continue to gain momentum.

Image of a screenshot of the Committee Opinion from the Committee on Adolescent Health Care from ACOG: https://www.acog.org/-/media/Committee-Opinions/Committee-on-Adolescent-Health-Care/co668.pdf?dmc=1&ts=20200120T1020010805

There are a multitude of reasons why one may consider menstrual suppression options.

In the case of people living with severe cognitive disabilities, challenges related to communication can lead to a number of concerns for caregivers. How will they know if their client is having bad cramps, or experiencing other painful symptoms? Seizure disorders like epilepsy have been linked to a predisposition for Polycystic Ovary Syndrome (PCOS), which can be especially concerning when verbally communicating pain isn’t possible.

“Other caregivers have noticed that seizures can become longer and get more intense during their client’s period,” says Michele. “Other people also notice that with hormonal changes, like during PMS, seizures can get worse.”

This trend is not well-documented in the medical literature, but is consistently observed by caregivers of children with CDKL5 deficiency disorder. As we push forward to advance menstrual health research, it is essential that we honor lived experience as we look to fill the cracks in these evidence gaps.

In the world of period product innovation, some are taking matters into their own hands to accomplish just that.

Recent innovations in femtech — from menstrual cups to period underwear — have given people the freedom to choose from a variety of methods that best suit their flows and their wallets. These innovations have particularly salient implications for people living with disabilities.

Gif of how the Flex Cup works, with a hand demonstrating the adjustable pulls-string stem technology. Image from https://flexfits.com/products/flexcup.

The Keela Cup, for example, was developed by founder Jane Hartman Adamé. Adamé’s experiences living with Ehlers-Danlos Syndrome, which is characterized by overly flexible joints and fragile skin, inspired her to design a menstrual cup with an adjustable pull-string stem so that she and others with similar issues could remove the cup as easily as they would a tampon. The Keela Cup was acquired by the FLEX brand last year, and is now widely available in US stores (Target!) and online. This eco-friendly product allows users of all abilities to enjoy a reusable period care option, and joins a myriad of other products that accommodate a wider variety of user needs.

The barriers to managing menstruation experienced by Michele and Mary are consistent with existing research on menstruation and disability. These barriers include a lack of guidance and standardized curricula for caregivers, limited clinical understanding of the relationship between disability and menstrual complications, and a limited offering of appropriate products.

More research is desperately needed on menstrual products, caregiver education and training, severity of symptoms, and the menstrual health requirements of people with disabilities and their caregivers in order to manage menstruation hygienically and with dignity.

The movement for menstrual equity has a long way to go, and working to eliminate shame and stigma must be inclusive of all abilities.

We suggest you read this interview for more of Mary and Michele’s unique perspectives on managing menstruation as a team (shared with permission).

Do you have experiences navigating the double stigma of menstruation and disability on your own or as a caregiver? Share your thoughts in the comments!

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Madami

Madami

A social impact agency specializing in gender, female & menstrual health