{"id":977,"date":"2019-10-26T11:44:10","date_gmt":"2019-10-26T15:44:10","guid":{"rendered":"http:\/\/www.dysautonomiainternational.org\/blog\/wordpress\/?p=977"},"modified":"2019-10-31T05:05:54","modified_gmt":"2019-10-31T09:05:54","slug":"finding-the-good-amongst-the-bad-life-with-chronic-illness","status":"publish","type":"post","link":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/finding-the-good-amongst-the-bad-life-with-chronic-illness\/","title":{"rendered":"Finding the good amongst the bad – life with chronic illness"},"content":{"rendered":"

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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\u2019s encouraging to see others learn about dysautonomia and the impact it has on the lives of patients, caregivers, family, friends, and doctors.\u00a0<\/span><\/p>\n

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\u2019ve 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 \u201csickiversary\u201d – 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\u2019ve been sick with POTS, 12, and of the years I\u2019ve 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.\u00a0<\/span><\/p>\n

When I fall into this negative reflective spiral, I buoy myself by thinking about all the progress Dysautonomia International and this movement\u00a0have 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.<\/span><\/p>\n

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.\u00a0<\/span><\/p>\n

Creating this list helped me see that things aren\u2019t as black and white or as good and bad as my mind likes to tell me they are when I\u2019m down. Knowing I\u2019m not alone in trying to make sense of life with dysautonomia, and discovering that this list helped me find some solace, I thought I\u2019d share it. I\u2019m hoping it may help others see bits of good that in their own dysautonomia and chronic illness experiences.<\/p>\n

POTS has given me:\u00a0<\/span><\/p>\n