Here I am interviewing the lovely Mildred, founder of a non- profit for fibromyalgia and recovery called Fibromyalgia Care Society Of America Inc. There are a wide variety of resources available to the public at her organization, and I have had the pleasure getting to know her and collaborate on working together.
I have a few questions for Mildred.
1. Could you tell me more about your background and how you came up with Fibromyalgia Care Society of America?
My career began 27 years ago in the world of Social Service. In 2015, the Fibromyalgia Care Society of America, Inc. was born from an awareness walk. After realizing the lack of awareness regarding fibromyalgia and the need to unite the community, I decided to bring together a group of people and create the first awareness walk for the Fibromyalgia community in NYC. Within the first few weeks of planning, I quickly realized the lack of resources in our community. As the community became aware of our initiative, many began to share their personal stories with me. The stories mostly consisted of things that are often found at social service organizations. Those stories forced me to reflect on how I could use my background to fill the voids in the fibromyalgia community.
2. Have you had experience working with nonprofits before? If so, how did that inspire you to start
I have worked in the not-for-profit sector since 1997. In 2002, I was part of a small start-up team that founded the first LGBTQ youth shelter in the Nation. This was a not-so-easy task. The young people were being abused emotionally and physically at other shelters. At the time, the people opposed to what we were creating began comparing our program to “segregation”. They refused to understand two simple concepts:
1. We were on a quest to protect the young people from the harm of homophobia they were enduring at home, in the community, and at city-funded shelters.
2. Working on educating the larger community on how to properly care for our young people would not happen overnight. We had to prioritize the focus on meeting the young people’s basic needs-the right to safe shelter.
Having the experience of growing a grass-roots start-up to the multimillion-dollar organization it is today, motivated me to do more for the fibromyalgia community. Hearing stories of abuse, lack of understanding, and the individual needs of the fibromyalgia community was all the inspiration required to start the Fibromyalgia Care Society of America, inc.
3.How has fibromyalgia impacted your daily life? What’s a typical day like for you?
Fibromyalgia has impacted my daily life in many ways. First and Foremost, it has taught me to be an avid listener. I begin every day by listening to how my body feels, what it needs, and how much it can handle. I also actively listen to what the fibromyalgia community members’ individual needs are. I understand that although we all share a common diagnosis, I must comprehend the community’s individual needs. It is the only way we can meet them.
A typical day
I begin my day with a morning meditation and prayer, driving my Granddaughter to school, having a light breakfast, checking and answering emails, working on social media posts, taking a break to grab something to drink, stretch, dance, or do whatever my body needs at that moment. The afternoon is spent working on special projects, leading in-person or virtual empowerment groups, and attending meetings, training, or a webinar.
On some days, I schedule commuting to the office. I have found that a hybrid schedule works best for me. If you are a person that is able to meet the essential functions of your job and work hybrid, I highly recommend you request this as an accommodation. The hybrid schedule allows me to work comfortably anywhere in my home, while also pushing me to get up, get dressed, and connect personally with other humans outside of my computer.
4.What advice would you give to those suffering symptoms and don’t have access to or economic means for treatment?
I would highly encourage them to attend our virtual empowerment groups. The sessions are all tailored with the needs of our community members who are living on limited incomes. At these group sessions, we share holistic ways of using a CBT approach to manage fibromyalgia. We understand that chronic illness can affect finances and that stress can exacerbate fibromyalgia symptoms.
5.How has working with other doctors helped your organization and others?
Working with Doctors has helped bring education to our community. However, many of the Doctors who support our organization are overwhelmed with the demands of treating patients. Many of them because of their busy schedules are not afforded the outpouring of support that our community desperately needs. As a grassroots organization, we understand and appreciate when Medical Professionals can make themselves available to us.
6.What inspires you every day? What personal story do you use to help motivate your work with your non-profit organization?
My children, family, and faith are my daily inspirations. Using my faith to heal from my past has allowed me to understand the journey God intended for me. I know there is a major purpose for why he saved me from every traumatic experience. Knowing that healing work is what will break generational curses for my children, family, granddaughter, and future generations is my daily dose of inspiration.
My personal motivational story is constantly changing as I evolve. More recently, it is what I endured during the pandemic. In 2020, I lost my career of 18+ years and my marriage of 22 years. In the midst of it all, I almost lost my mind. At that time, I found myself alone with very little help other than from my adult children who stood by my side. This was very scary for me and added additional hurt and burdens to all the physical and emotional pain I was facing. Fortunately, it was through my faith and love for my family that I was able to:
Find my true identity
See and understand love through a different lens
Prioritize me for the first time
During this same time, the FCSA was piloting a virtual coordinated care program. Through this program, I was able to connect and better understand the needs of the fibromyalgia community. I think there is something very unique that happens to us when we are deeply wounded and simultaneously attending to other people’s wounds. This personal story is the one I keep as motivation because it helped me understand the inhumanity of what many of us have survived!
7.What are some of your organization’s future goals? Projects?
My future goal is to offer a virtual coordinated care program to all who need our help. Due to a lack of funding, we currently have over 380 people on a waiting list. Therefore, my very near future goal is to actively work on demanding that funding be earmarked for fibromyalgia supportive services.
Currently, we are working on a video project. The video project is a visual summary of my most recently published article- Fibromyalgia and Mental Health: The High Costs Survivors of Trauma Pay. Through the video project, several women will share how the impact of trauma and fibromyalgia has forced them into a socioeconomic disadvantage.
We are also currently promoting our annual awareness walk in NYC. This year’s walk will be held at Hudson River Park-Pier 84 on May 4th, 2024. If you are unable to join us, you can still participate via our virtual walk-iCaterpillar. To learn more, visit our crowdfunding page here