woman enough: living with parkinson’s disease as a woman and being a voice for change
6 minute read
li jiang's symptoms worsen around her period, and no one can tell her why.
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li jiang has lived with parkinson’s disease since she was diagnosed at only 21 years old, while living in china as a third-year university student. when she first heard her diagnosis, the experience was “surreal” to the point that she didn’t want anything to do with it. she spent over a decade in denial, avoiding learning more about parkinson’s or others who live with the disease, and living her life as if her diagnosis was nothing more than a bad dream she couldn’t shake.
“i realized that’s not working very well and i need to accept it,” she said after realizing that, while she didn’t want to deal with her parkinson’s, she couldn’t run from it. “accept it as a part of me and accept other people with the disease that can form my community to go through this journey.”
while jiang wanted to build a community, it wasn’t until she was teaching women entrepreneurs how to use their stories to develop mission and values for their business ventures that she realized that sharing her unique experience with parkinson’s disease was a way to connect and inspire others.
“it was so touching, and i was hugely impacted,” she said. “i thought, i am teaching them to tell their stories. i should really look at myself and tell my story. so, that’s where this all started.”
she opened up on linkedin and sparked a chain reaction that has allowed her to form and keep connections that really mattered. jiang’s story is just one of the few women living with parkinson’s today participating in parkinson canada’s latest campaign, woman enough.
the campaign aims to highlight the unique challenges and realities that women with parkinson’s disease face while further exploring the gaps in research and care.
living with parkinson’s disease as a woman
parkinson’s disease is often considered an “old, white man’s disease,” but it can affect all genders and all ethnicities. while men are approximately 1.5 times more likely to have parkinson’s than women, the prevalence among women is significant. in canada, more than 100,000 people live with parkinson’s; roughly 40 per cent of those are women. furthermore, while often associated with caucasian populations, research indicates that the incidence among hispanic populations is approximately 166 per 100,000, compared to 154 per 100,000 in caucasians, 113 in asians and 102 in black populations. due to the misconceptions, women who live with the disease, including those who were diagnosed younger, such as jiang, continue to experience lackluster care due to limited knowledge around how it affects women’s bodies overall.
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for jiang, parkinson’s feels like an “inconvenience.”
she wakes up an hour earlier than she has to in the morning to take her medication and give it time to work because walking is difficult at the start of her day. it also pops up during times of high stress, like when she’s taking exams, causing tremors that make it difficult to hold a pen.
“i was able to take deep breaths and calm myself down and write one letter after another,” she said about how she had to finish her exam. “so, i think nowadays it’s just a matter of, i face the challenge, i acknowledge the challenge, and i find ways to deal with it.”
jiang used to grapple with emotional turmoil surrounding her disease, wondering why her, but now she faces each challenge with grace and a solution-oriented attitude—especially when her period rolls around and her medication doesn’t work as well as it does at other times throughout the month.
the gap in care and knowledge
not much is known about how periods affect parkinson’s disease because of the typical onset being older and the misconception that men are the only ones who deal with it, but for jiang, it’s a reality every single month. even while visiting her doctor, jiang’s response to questioning why things were worse during her period was met with an “i don’t know” because she’s the only person he sees who has a period.
“when i first heard that comment, it was well into my journey with parkinson’s,” she said. “it’s kind of normalized in a sense that i know doctors don’t know everything and i really don’t rely on knowing everything from the doctors. so that’s just something like, ‘oh, you don’t know?’ so, then let me try to learn more about myself, try to track everything.”
during her period, jiang’s symptoms become worse, with fatigue, exhaustion and vomiting becoming a regular occurrence. her medication also doesn’t work as well during that time, so when her doctor couldn’t give her the answer, she asked for their support to play with her dosage around that time to manage things on her own.
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“they’re very supportive of me trying out different medication doses during those several days,” she said, later noting, “sometimes it helps, sometimes it’s still not 100 per cent helping. i still need to do trial and error with it.”
jiang’s self-driven treatment of her sex-related issues with parkinson’s isn’t exclusive to her. many, if not all, women living with the disease deal with the same overlooked experience.
jiang notes that she’s participated in parkinson’s research and bike rides across the united states and canada, and has found that the number of women involved is much lower than it should be.
“women internalize a lot of household responsibility to the point that they don’t give enough time and energy and attention to their own health … and they just don’t come out to participate. i think showing up is so important, especially for women,” she said.
exercise is incredibly important for parkinson’s care, but many women are either unaware of that or cannot get out enough to have it matter.
using her voice to make real change
jiang’s involvement in the campaign comes from a feeling of responsibility because many are “silent with this disease and suffering with this disease.” parkinson’s in women is incredibly understudied; there are not enough advocates for women with the disease, and doctors lack the knowledge and experience needed to provide care that truly addresses the unique complications that women face.
“for example, menopause. there’s a lot of different complications involved with parkinson’s, and sometimes doctors don’t know whether this is part of parkinson’s or this is part of menopause or this is part of some other disease,” she said. “and that kind of complication really makes women confused. where should i go? who should i ask?”
it is jiang’s hope that by sharing her story, and with other women sharing theirs, too, together they can collectively drive change in all the areas that truly matter for women living with parkinson’s disease.
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“i hope that women can be more comfortable in taking time to take care of themselves,” she said, adding that she hopes one day women won’t have to fight or advocate so hard to be heard and understood in their doctor’s office. “i’ve had to change my doctors in order to feel comfortable with their care because the previous ones, they just didn’t care. they didn’t want to listen, and i hope the doctors have enough awareness of listening to patients because, and this is something i heard from a doctor that’s dealing with parkinson’s … ‘there’s just so little we can do for our patients, at least we can listen.’”
she also wants women to know about the resources they can access through parkinson’s canada, such as a book recommended by jiang called every victory counts, as well as through support groups, phoning others living with the disease, or just sharing their experience with others.
“i have received so many phone calls from newly diagnosed people. they just talk about what they experience and within an hour, they feel better. it’s not what i said, it’s just the sense of, ‘oh, i’m not alone.’”
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