Each October I find myself inspired and empowered by the amazing work Dysautonomia International and the entire dysautonomia community does to raise the profile of illnesses of the autonomic nervous system. Awareness Month is an incredible tool to gather the collective power of this movement and elevate our stories in service of change. It’s encouraging to see others learn about dysautonomia and the impact it has on the lives of patients, caregivers, family, friends, and doctors. 

With each passing Awareness Month I feel more seen and understood, but I also wrestle with the pain of reflecting on life with POTS. Overall, I’ve gotten better at sharing my personal story without feeling the weight of it each time. But something about Awareness Month – the intensity of it and the many stories I hear of others suffering from the same senseless illness – brings a surge of sadness into the fore. Adding to that, October 1st is my “sickiversary” – the date in 2007 when I sustained a concussion triggering the onset of POTS. Each October, I find myself making a tally of the years I’ve been sick with POTS, 12, and of the years I’ve been diagnosed, 5. Those numbers stare at me and I stare back, knowing the pain, loneliness, and desperation that filled them. I reflect on those years not from the security of distance, but while feeling their presence. I remain consumed by the daily battle of life with POTS along with many co-morbid conditions. 

When I fall into this negative reflective spiral, I buoy myself by thinking about all the progress Dysautonomia International and this movement have made in a few short years. The diagnostic delay is down from 6 years 5 months to 4 years 2 months, and still improving. Fundraising is increasing and research is gaining speed. Volunteers have organized POTS walks around the country – from Boston and Philadelphia to Milwaukee and Greensboro. Lobbying and media efforts have started elevating dysautonomia in the public consciousness. Buildings have lit up across Australia, Malaysia, Japan, Canada, the United States, and beyond to #MakeNoiseForTurquoise. All of this signals a better future for the 70 million of us with dysautonomia.

Generally, thinking about this progress is enough to lift me up and propel me forward with renewed energy. But this year I found myself stuck. I began searching for a way to get out of the rut. I came to see that while my sadness is valid, it is not the complete picture. At the front of my mind there is a list of things POTS has taken from me, but hidden away there is also a list of things POTS has given me. I tend not to focus on the positives because it feels counterintuitive – why would I celebrate any outcome of being sick? But I realized I could acknowledge that good things have come from being sick without being happy that I got sick. So I started compiling positives and the weight began to lift. 

Creating this list helped me see that things aren’t as black and white or as good and bad as my mind likes to tell me they are when I’m down. Knowing I’m not alone in trying to make sense of life with dysautonomia, and discovering that this list helped me find some solace, I thought I’d share it. I’m hoping it may help others see bits of good that in their own dysautonomia and chronic illness experiences.

POTS has given me: 

• Resilience: Living life with a chronic illness has absolutely made me stronger. Surrendering to the daily uncertainty of POTS has equipped me with the tools I need to respond to adversity. I now see my abilities to endure and adapt as two of my greatest strengths.
• Mental health: I began therapy because of the impact being sick had on my mental health, but therapy has helped me cope with far more than my illness. It has enriched my life by teaching me how better to confront and unpack things. It’s made me more emotionally intelligent and strengthened my relationship with myself and others.
• Purpose: It took seven years for me to get diagnosed with POTS and I know my story is not unique. Knowing that millions of others were also struggling with this common but little known illness made me angry. That anger fueled a drive to speak out and fight for change. So I became an advocate and found the power that flows from vulnerability and the energy that comes from joining a movement.
• Authenticity: As a kid I struggled to be myself and often felt uncomfortable and uncertain. But the past 12 years of being sick have helped me shed that layer of insecurity. Speaking out about my experience and publicly sharing intensely personal and sometimes unflattering aspects of my life has numbed the feeling of self-consciousness. In its place I’ve found self-assurance, which has freed me of so many trappings.
• Community: POTS has given me a reason and a means to connect with others. I’ve met many incredible POTS and chronic illness warriors who have enriched my life. I’ve also received so much support and kindness from friends, family, and strangers. The fight against POTS is truly a movement, and this movement fills me with love and strength.
• Family time: I am lucky to have the unwavering support of my family. They’ve battled this shared enemy with me, and have shown me the meaning of devotion, selflessness, and love. Being sick has given us time together that we wouldn’t have otherwise gotten. Though that time is often spent in doctor’s offices, at my bedside, over SCIG infusions, or trips to the pharmacy, I’m grateful for it. 

What would be on your list? I’d love for this to be the start of an ongoing conversation that helps us inspire and lift each other up. This process won’t make the bad go away, but maybe it’ll make us all feel the good just a little bit more. And I think we’ve earned any happiness we can find, right?

Guest blogger Hanna Rutter Gully is a proud member of Dysautonomia International’s Patient Advisory Board and a self-proclaimed hair dye addict. She’s tried to live life to the fullest despite the presence of many unwelcome companions, including POTS, gastroparesis, MCAS, chronic migraine, joint hypermobility, post concussive syndrome, and an autoimmune disorder. Her favorite part of managing these conditions is her morning coffee, and her least favorite part is everything else. 

by

by