Jane Hartman Adamé
It somehow slips society’s mind that disabled people can menstruate, be considered sexually attractive, have sex, and even reproduce. Of course, some of these are not true of all disabled people, but neither are they true of all able-bodied individuals. All of these same complexities that an able-bodied person can experience are also possible for disabled individuals like myself.
Adding to the complexity of menstruating with a disability is that products that are made to manage and support our menstrual health and wellness are often made without any consideration of our specific experiences. As a result, it can be a struggle to find products to meet your individual needs. Luckily, changes are happening in this arena, with more innovative, unique, problem-solving products arriving to market at an increasing pace. However, we have a lot of ground to make up for.
When we consider the concept of disability and menstruation, one often-neglected concept is that menstruation itself looks a lot like disability. I’m not speaking just about dysmenorrhea, or endometriosis, although those certainly can qualify as well—but even the “simple, normal” menstrual cycle. To wrap our heads around this, let’s look at two common definitions of disability, the medical model and the social model.
As a medical condition, menstruation requires intervention with (usually) approved medical devices to manage the collection of the menses itself. It can also require care and treatment for the symptoms that come along, such as pain and inflammation, by over-the-counter pain meds, warm compresses or packs, or pain creams applied to the lower abdomen or even the low back.
In a more social context, a menstruating person may need to alter the clothes they wear for the day to accommodate bloating and provide comfort, which could alter how they are perceived (or feel they are perceived) outside of the home. They may need to miss a day or two of work with severe cramps, or heavy bleeding that requires frequent product changes. These frequent bathroom trips or distracting bouts of pain can inhibit job performance, eat up sick days, and have a myriad of other impacts on a person’s life. Due to the cultural shame and taboo surrounding the period, attempts are made to hide these changes, such as tucking one’s tampon into a sleeve to slip unnoticed into the bathroom. Additionally, there is social pressure from advertisements that a person should be able to go forth and be productive- period or not. There is also pressure, due to the normalization of this process, to not seek medical care for menstrual issues. It’s seen as something common, but even common conditions can have significant impacts on us.
The menstrual cycle, when viewed through the lens of disability, is a relapsing, recurring condition (in that menstruation itself and its uncomfortable symptoms occur approximately monthly for a number of days, and then recede for the remainder of the month) that just so happens to occur with such prevalence and regularity that its very essence is dismissed, and complaints about changing symptoms can be overlooked or ignored. Even just the fear of the possibility of being dismissed (in addition to the shame and taboo aspects of this area of our health) keeps many of our menstruating community from setting foot in a doctor’s office to talk about these issues.
Evidence of delayed diagnoses of endometriosis and other serious life-affecting menstrual conditions shows us that menstruation is not taken seriously. When you add menstruation to disability, then you have a double whammy. Women’s pain is expected, from all processes from typical menstruation, to atypical menstruation, to childbirth and beyond. If we allowed ourselves to look at the taboo concept of menstruation with the lens of the even more taboo concept of disability, we could start to treat both of these states of being with more care, both medically and socially.
Although I can’t speak for all disabilities, living with hypermobile Ehlers-Danlos Syndrome certainly poses some challenges when it comes to managing my menstrual cycle. Chronic pain, alone, can be greatly exacerbated by menstrual pain. Add to that the risk factor of changing out menstrual products with dislocation risk, and it’s clear that periods are extra challenging to manage. Another challenge that my disability poses, and which is certainly not unique to me, is pelvic floor dysfunction. Whether you have a weakened pelvic floor, prolapse, vaginismus, or other eccentric pelvic muscle activation, internally worn products can be a pain to use. Anything requiring bearing down (applying downward force to the pelvic floor by way of muscle activation) can be a risky thing to do if the pelvic floor is weakened or any organs are prolapsed. If muscles are overly tight, internally worn products can be uncomfortable to wear or pose a serious challenge when it comes to removal.
Outside of my personal experience, I’ve also come to learn of the challenges faced by folks who utilize carers to manage their menstrual hygiene. This can be a challenging and sensitive subject, as the carer has to directly interact with the user’s menses. Of course, menstrual products are not made to be managed by anyone other than the user, which is where we find ourselves having to get creative.
Fortunately, many of us don’t have to be relegated to pads—although there is nothing inherently bad about a pad. It’s my belief that all menstrual care options are good options, and nobody other than you can decide what the right choice is for your body.
Personally, I do prefer internally worn products, especially those that require less frequent changes than tampons. Menstrual discs and cups can both be worn for up to 12 hours—even if you can wear your tampons for the maximum amount of time, which is 8 hours, these newer options cut down the number of product changes per day from 3 to 2. This may seem like an insignificant difference, but if you have mobility challenges, fatigue, or chronic pain, one less change per day can mean the ability to use that energy for something else.
When I lost the ability to use my menstrual cup, I was devastated. For myself and many others, the complicated maneuver required to remove a cup makes it nearly impossible (or very risky) to use. Many times, I subluxed or dislocated joints and/or set muscles into spasm, all from trying to position my body and arm in such a way that I could grasp the cup to break the seal in order to safely remove it. Instead of admitting defeat, I decided to create a cup that I and others like me could use.
With my design, now known as the FLEX Cup, I added a ReleaseRing™ which is a piece that threads from the top of the cup through the middle, ending in a soft silicone ring that moves with your body when worn, so the cup can be worn low with the ring accessible in the labial area, or more internally. Either way, since this piece is attached to the top of the cup, it indents the side when pulled and makes cup removal more akin to removing a tampon.
When we launched the cup on Kickstarter, it made huge waves—many people never considered the challenges that those of us with disabilities faced during menstruation. Others who were nervous to try cups found ease in this design. With many people, both disabled and able-bodied, the risk of potentially ending in the ER to have the cup removed was a deal breaker. I knew that eliminating this risk would be of great benefit to so many people. During the Kickstarter, The Flex Company saw value in our design and eventually bought the patent. They also added my cofounder Andy Miller and myself to their team, and together we are making great strides to make menstrual products comfortable and accessible to all, having landed on retail shelves just about a year after inception.
The other product we make, the menstrual disc, can be a great option and is a top choice for those with Ehlers-Danlos Syndrome and other mobility-limiting conditions. Since insertion doesn’t require any complex folding or grip strength, insertion of a disc can be easier than a cup for some. Since this product can also be worn for up to 12 hours but through its single use, it eliminates the cleaning process, which can be taxing for many. Additionally, the FLEX menstrual disc is the only disc available on a subscription cycle—we don’t usually consider the process of going to the store to restock menstrual products as an access issue, but it is. Here, reusable options or subscription services can be great access solutions.
So, how do you determine what is the right solution for your body? I know many people flock to YouTube to watch reviews of menstrual products, but in truth, there is so much variance in our anatomies, regardless of additional conditions and factors, that there is only one true way to determine what will work best for you—and that is to give new things a try.