Patient Story

Building community: One shared experience at a time

I first began exhibiting symptoms of what I now know is Rapid Cycling Cyclothymia, a rare mood cycling disorder, when I was two years old. It took me until just before my 30th birthday to finally get diagnosed. Upon getting diagnosed and beginning treatment, I decided to find as much (reliable and accurate) information as I could on my condition. My therapist helped of course, but I wanted to find a community, or at least a few others that I could speak with from the patient perspective. I wanted to learn about my illness from every angle possible, to be have as much knowledge about it as I could. And what I found was practically nothing. It felt incredibly lonely to have this condition that often gets lumped in with others, that nobody seemed to have heard of – including many health professionals outside the purview of mental health, to not have other patients to share with.  Furthermore, I struggled to find others who spoke about mental health – this was nine years ago, and mental health was significantly more taboo than it is today, though there’s unfortunately still plenty of stigma.

Still, I was sure that there were others “out there” who were experiencing what I was experiencing, who were struggling with their mental health, maybe even with cyclothymia, and who wanted to connect to others that understood. So I decided I that if I couldn’t find options to connect with others, I’d provide it myself. I began to blog about my life with rapid cycling cyclothymia and about my mental health in general. At first, it was mostly family and close friends reading. After a while, I began receiving messages from readers with cyclothymia and other mood disorders, and the message was almost always the same – they struggled to find any information on it, or anyone else to connect with that understood what they were going through. After receiving enough messages and comments along this line, I decided to start a closed Facebook group for people living with mood disorders. I wanted to offer a safe space to ask questions, share, vent, seek and offer support from others who understood based on lived experience.  

Eventually, I began sharing my story not just on my blog, but on social media as well. I followed other patients who were tweeting and posting about mental health and chronic illness. I started participating in twitter chats around these topics. I wrote a few guest posts on other blogs about mental health, and I began joining patient-centered organizations, such as WEGO Health, that allowed me to further connect with fellow patients who wanted to share their stories and raise awareness.  In 2013, I ramped up my efforts further when I decided to participate in the Overnight Walk for Suicide Prevention, held by the American Foundation for Suicide Prevention (AFSP). I began fundraising and training and raising awareness for the cause and the organization, and have done so every year since. During this time, I also got certified in Mental Health First Aid.

In 2016, I founded the Spread Hope Project. The aim of the project is two-fold: First, I simply want to, as it sounds, spread the message of hope. I know from my own life that sometimes it can be the simplest things that can offer us hope when we’re in a difficult place – a message from a friend, a kind note, a sunny day after it’s rained for a week, a pet happy to greet you when you get home. Sometimes it’s simply finding a peaceful moment in nature that allows us to pause, when our brain’s been bombarded by anxiety. I wanted to share these messages with others, to be able to be that tiny spot of hope when they were struggling, to remind them that they weren’t alone even when it felt it. I wanted to offer even the smallest encouragement, to give them something to hang on to when they felt at their worst.

Secondly, I know how challenging being an advocate can be. We are working to share our message, to help others, to impact change, all while battling illness, possibly while pursuing a career or raising family, or both (and so much else). It can take tremendous time and effort to feel like you’re making an impact advocating, and at times it can feel like a near impossible task, especially as a solo advocate. So I decided that I wanted to help other advocates promote their efforts via the Spread Hope Project. I know sometimes feeling like you have someone else to bounce ideas off of, to jump in when you need help, to share what you’re working on for a broader reach, can feel so hopeful, and I want to offer that. This wing of the project developed recently, and I’m making some big plans (at least big to me) for 2019. I love connecting with advocates online, but I also want to get out from behind the screen and connect in real life. I’d like to “get on the road”, meet up with fellow advocates, and help them with their efforts – whether it’s “interviewing” them about their advocacy and sharing it on the blog and social media, or helping to plan an awareness activity or campaign, or participating in a walk/event if the timing works out, I want to get boots on the ground and connect. So I’m working on plans to make that happen, hopefully in 2019. In the meantime, I’m working on spreading hope one day at a time, one post or share or image at a time, and continuing to share my story of life with a rare mood cycling disorder, in the hopes that it will help others to feel less alone.