Celebrating "Volunteer Month"-Honoring the Heart of DSN

Volunteering takes a special kind of person. It is something that is built deep into our souls and resides in our hearts. The DSN logo is that of a heart. There is a reason for that.

“The story behind our DSN logo design; Our open heart design was chosen because it is flexible, and has room for growth. The red half of the open heart represents Support (the artery that brings life to the heart), the turquoise half of the open heart represents our members and volunteers (the vein that returns blood to the heart), as our mission is to empower patients to become leaders and advocates. The red overlaps the turquoise half to remind us the two are dependant on each other to thrive. The colors are also significant because some of the first Dysautonomia related organizations claimed red as the color of awareness. In 2012 it was changed to turquoise by another, organization. I wanted all patients to identify with the colors in our logo as we are an inclusive organization. Our logo was created by our founder, Amanda in 2015”.

When our founder, Amanda embarked on this journey in 2012 with one small Facebook support group, I wonder if she ever imagined how big of an impact DSN would have on the lives of its members and the chronic illness community. DSN has 60 Facebook support groups and lifestyle clubs and provides support to patients all over the world. None of which would be possible without our volunteers. There are over 50 volunteers who devote their time, talent, heart and energy to ensuring that DSN flourishes and that patients receive the support they need. All of our volunteers are also patients and/or caregivers, themselves. They all have a heart to serve others and to be the heart of the organization that is Dysautonomia Support Network.

April is National Volunteer Month and this past week was National Volunteer Week. In place of our normal member feature column I wanted to feature the other half the heart that is the DSN logo, the volunteers. We asked some of our volunteers why they volunteer with DSN and how it has affected them in their own chronic illness journey. I hope you enjoy reading what some of our amazing volunteers had to say, I know I did. It is truly heartwarming and moving to see into the doors of their hearts through the words they offered up.

Tiffany T, DSN’s Social Media Director- Throughout my life, I have always loved making other people feel loved and happy. Volunteering does that to me, it also gives me hope. Hope for myself and for others who fight the same battles. It gives us the opportunity to change people’s lives, including our own. I believe that we help reduce stress, combat depression, stimulate, and provide a sense of purpose. DSN isn’t just a community; we are a family. We bring people together all over the world to work on the same goal. Being a part of DSN’s family will give me memories that will last and the gratification of my own personal act of kindness.

Sarah W, State Moderator, Mindfulness Club Moderator and Special Teams- I picked DSN, because I identified a lot with the culture of the group. As someone without a POTS diagnosis, I really appreciate DSN's efforts to be inclusive of all dysautonomias. DSN has definitely become a huge part of my personal support network - even more so once I became a volunteer.

Emi M, Red Team Regional Leader-I picked DSN because I had been a part of the Divas and Dudes group for awhile (and made aware by a friend with dysautonomia who lives in RI). It was in the D&D group that Ginny told me that there was a Maine state group that I could join. I don't remember if Ginny asked if I wanted to be a mod or if I just filled out the paperwork, but feel like Ginny likely had a hand in it! ;-p I liked that I could volunteer with a group that understood my limitations. I felt less afraid and guilty as I knew I would have "bad" days, but wasn't afraid that they would misunderstand and have it become a "thing". I felt that I would be accepted for my strengths and not chastised for mt limitations, and I was right. Volunteering for DSN kept me busy and sane once I finished graduating from college. I didn't know what my next step was, and while I was figuring that out, DSN gave me a purpose. Once I was involved I couldn't get enough. After I had proven to myself that I did have something to contribute to society and could be relied upon/dependable given the right conditions I applied for a job. It's small. There aren't many hours and I don't make much money, but it's a start in the right direction and without DSN I don't know that I would have had the confidence to go for it. Being a part of DSN certainly helps me in terms of socializing. I spend the vast majority of my time alone at home, so talking on fb with my DSN team about work or mundane things helps me feel more connected to the world. Overall, DSN provides a place to make friends and connect with people in a way that allows me to be unapologetically myself. I'm in a room and I feel normal. That in and of itself does wonders for the soul. DSN has helped me make friends, even though we've never met in person, and know I can say something about my day, a symptom, an appointment and not just get back platitudes, "advice", or other hurtful or unhelpful comments. I cam to DSN because I needed answers to all of my questions in my attempt to try to fix my life so it was like nothing had changed. I stayed because I found an amazing community that supported me when I finally realized that the vase of my life had cracked and it was never going to be the same again, and that it was okay. I stayed because I found my tribe and I could not leave and because there was nowhere else I'd rather be.

Alexandra Z, Global Regional Leader-I picked DSN due to negative experiences I have had in the past with other nonprofits, which ultimately led to DSN helping me the most as a newbie. When I became able to give back, it only made sense to give back to the place I got the most from. I do volunteer lightly (some moderating as I am able to) in two other groups on Facebook which are not nonprofits but are groups that also helped me significantly as a newbie. In the past I volunteered with a nonprofit and the reason I no longer volunteer with them has more to do with the work I was doing becoming something I was incapable of doing and no longer wished to do (grief program) as opposed to picking that organization over DSN.... as my volunteer work with DSN has increased, I do have less time for other ways and means of volunteering elsewhere, and in that sense I choose to continue spending the majority of my time with DSN for a variety of professional and personal reasons. DSN has helped me to better my skills professionally, and allow skills I already possess not to lie dormant while I am not working. I have gained many new skills through volunteering with DSN that I hope will help me when I am able to re-enter the workforce. DSN has helped to keep meaningful and purposeful interactions a part of my daily life-- this has both met my needs and the reason why I continue to stay with DSN. I try to be reliable. When I can, I give what I can. Sometimes I give a lot, and sometimes I give less-- the flexibility is one of the things I like about DSN.

Michelle S, State & Divas Moderator, Social Media Team- I started out with another dysautonomia support group as a moderator. While I enjoyed it, it didn't allow me to incorporate all the fun and creative ideas I wanted to do; instead, I was too busy taking care of rule violations and screenings for adds. While I don't mind doing either, I wanted to do more...much more. One day, I put up a post asking how many people would be interested in an Ohio group if I started one. Someone at DSN mentioned that there was an Ohio group already established in DSN. I thought I'd join to see what this group was all about. It didn't take long to realize that there was an obvious structure from the top down and from the bottom up, full of kind and supportive individuals. One day, while I was in the hospital, Cathy came to visit me and encouraged me to apply to be a volunteer. I didn't feel like I was worthy of being part of such a highly structured group, but I thought I would apply. After talking to Ginny around New Year's, I knew I HAD to be a part of this group. There were so many opportunities to do exactly the things I wanted to do in the group I wanted to create. When I found out I was accepted into the group and did my training, I realized I felt like I was living in a dream. After I met Shannon and Amanda, I knew I would be part of DSN for quite a long time. My health may get in the way, but my heart never will. DSN has worked hard to find places where I fit in, and for that I'm eternally grateful. For the first time, I feel like I've found somewhere where I truly belong! How has volunteering for the DSN impacted your life personally, professionally, emotionally or mentally? Personally: I have been given a sense of purpose that extends beyond the norm. I have been able to help individuals in ways that are almost chilling, mostly through PM. When DSN members see how much I care, they reach out and ask questions about what their tilt table test or gastric emptying test will be like based on me posting about my experiences. Not only can I give them reliable links, but I can help them restructure how they think about the test to cause them less anxiety. I get so many thank you notes and the sweetest notes from people checking in on me when they know I'm in the hospital. These moments are priceless. One of our members even came to visit me in the hospital yesterday and brought me a handmade card. These are the things that personally touch me in the deepest ways.

Then it came my turn (Reanna) to comment on how DSN and being offered the opportunity to volunteer had affected my life. I must say I never thought that I would be giving back in the midst of my illnesses. In the beginning I was very depressed and saddened by the loss of the daycare I owned, my having to dropout of college after my brain surgery and all the loss of my service work that followed. I found myself in a very dark place. Finding more volunteer work was the furthest thing from my mind, I wanted to hide away. I would say, I did not seek out and chose DSN, they chose me. LOL. Volunteering for them was not something that was on my radar until it was. I was in the VA group as a member but kind of hung back a bit, hardly posting.The superhero 5K came around and I had the idea to write an article about it and submit it to The Mighty. I was so inspired by the participants and all the determination they displayed. After I wrote the article, I was approached by some members of the leadership team about volunteering and I did some research about who DSN was and what their mission was and decided that I wanted to be a part of it. I love volunteering and service work and when I got sick I had to stop doing much of what I used to. That broke my heart, and then DSN comes along and tells me that I can do all of what I used to and more, all online.That was intriguing. I am so glad that I accepted that invitation. I have a sense of fulfillment where there once was sadness and emptiness. I am now the blog editor, Regional Leader for the Lifestyle Clubs as well as getting to dabble a bit on different projects and this was exactly what I needed. To get outside of my illness and breathe.

DSN would not be what it is without it’s volunteers and leadership. WE are a team, a family and nation of support around illnesses that attempt to debilitate and break us. Happy Volunteer Month to everyone who makes this organization what it is. You are the heart of DSN.

If you want to be involved and volunteer with DSN apply today and join our team! Click Here to Apply