Women’s empowerment and women’s voices in healthcare have exploded on social media recently. When we started the Women’s Parkinson’s Project, we knew we wanted to address a need, a gap, we saw. That gap was a place to share the voices of women, through stories, about their day-to-day struggles and their journey with Parkinson’s Disease and other neurological conditions.
We wanted to go slow. Give our project time to build up. We all had jobs, families, commitments, and of course our main partner to take care, the disease itself.
We thought we’d make a small impact. We thought we’d make a small difference. We did not anticipate the response. Women throughout the world contacted us directly not only on Instagram and Twitter, where we first launched, but also via the website, and on our personal Facebook pages.
We found that so many women were looking for support, a place to share their stories. We have seen our followers go from zero to over a 1000 across multiple platforms, based on our name and a few posts and tweets alone.
There is so much out there already, so many women and organizations doing good work via webinars, facebook groups, mentoring, that we were surprised. We shouldn’t have been. Parkinson’s Disease is the fastest growing neurological condition worldwide.
We were just getting started. So many ideas flew across our keyboards as we typed messages and emails, sent video calls, zoom conference, and that old standard, using the phone and having a voice to vice chat. We talked of webinars, booklets, guides, collaborations, even a conference! We were on fire!
And then, we hit the wall. The Parkinson’s Disease wall. We didn’t see it coming. But guess what? When you’re advocating for a cure and better treatment for the same disease you literally have, it takes a toll on mind, body and soul.
During this Covid era, especially, cut off from family and friends encountering death and suffering in our communities, things got to be too much.
We were overwhelmed.
There are no boundaries when doing advocacy work. But there have to be limits or we worsen the course of the very disease we are trying to raise awareness for.
Between the three of us we were members of numerous advocacy committees, had creative projects, were deeply involved with work, family, friendships, relationship issues and tragedies, all heightened during a pandemic. And of course we must not forget to have a life there somewhere.
Our first priority is in managing our own health. Our own well-being. And we fail, daily, as women, to do that. Only by taking care of ourselves can we be of service to others.
Most mom’s think instinctively that putting on that oxygen mask for your kid before you is what’s needed. Guess what? If you’re gone, no one is going to look out for your kids. You hope they will, you pray, but they’re busy looking after themselves and their loved ones. So put on your mask, and then your kids, because when you take care of your health you’re taking care of your family, of your community.
We had to make different choices. We had to cut things out. We had to take care of ourselves.
We scaled back our big launch plans, which was never the initial idea. We needed to be the tortoise, not the hare. From small acorns, we want to build something that lasts, something that recognizes with steady awareness the issues women with Parkinson’s Disease face. We want to see change happen.
So we cut things out of our schedule and lives. We resigned from committees. We took the slower path with personal projects. We let friends and family know that we had new boundaries. Why? So we can focus on our health, and thereby the health and advocacy of our community.
A fellow advocate wrote a fabulous article on burnout in advocacy. That is what we must avoid in order to win this race. Marie Ennis O’Connor of the Patient Empowerment Network gave sage advice from Breast cancer advocates and they have been in this game a lot longer than us. We should learn from our advocacy sisters. You can read that article by clicking here ->Marie Ennis O'Connor Article
We are now back to doing what we started out to do. Sharing our stories. Slowly gathering the stories of others. Because sharing our truth, our reality, as women with PD is how this starts. And then we must go further, and start looking for the government and the scientific community to pick things up.
There are organizations doing this already. And we are joining with them, working together, tremory, dystonic, rigid hands together, to find better treatments for the symptoms we handle everyday and for ways to slow or halt this blasted disease. Creating a ruckus is what we must do.
Sharing our stories requires courage, vulnerability, acceptance and accessibility. Sharing about Parkinson’s Disease takes time.
We must step away from our daily lives with work, families and friends, especially when we are hit with a wall of fatigue or a wrenching curl in our hands, preventing us from communicating. And then there’s menstruation and hormones. That’s it’s own novel. So we share when we can.
On World Brain Day, July 22nd, a day where we come together to acknowledge the stress of having chronic illness, of incurable neurodegenerative conditions, a day where we join as a community, we are here with one message.
We have not stopped. We have recalibrated. We are here to serve, to share, to raise our voices. Watch us, walk with us, join us, at your own pace, with your own health as your key concern. It’s a marathon, not a sprint. We will get there together.
With love and respect,
Richelle, Kat and Sree