How IBD Led Me to Be a Health Advocate & Make a Film!
World IBD Day takes place on 19 May each year and unites people worldwide in their fight against Crohn's disease and ulcerative colitis, known as inflammatory bowel diseases (IBD). Today and everyday we want to raise awareness about this disease, and show support to the millions of people and pets worldwide that live with inflammatory bowel disease. AnimalBiome is proud to share a guest blog article by film director, Saffron Cassaday. Saffron is directing an upcoming documentary called, “Designer Shit” a film about fecal matters.
In Designer Shit documentary film I explore fecal transplants and their efficacy as a treatment for my illness (Ulcerative Colitis) and a whole host of other microbiome related chronic conditions. And though FMT is the main focus, the theme of the movie goes beyond just FMT, to explore how we become our own health advocates and how we work towards cures and better care.
A study done in 2001 stated that chronic illnesses account for 46% of diseases globally. Even though having a chronic illness is common, it remains extremely challenging to manage and treat. As the occurrence of these diseases have increased, the research and treatment has yet to catch up.
I am one of the millions of people living with a chronic illness. I was diagnosed with Ulcerative Colitis (UC) nine years ago. At the time I would have never imagined I’d be talking about my struggle publicly, let alone making a documentary film about it.
I was an otherwise healthy twenty-two year old university student when I was diagnosed with UC. It was devastating to see the term, “Chronic illness” attached to my medical records. I was naive in thinking that the terrifying and often humiliating symptoms I was dealing with would abate overtime. I was stubborn in believing that I was either misdiagnosed or that I was going to beat all the odds and magically get better.
As time went on, the brazen ignorance of my youth dissipated and the symptoms of my illness progressed. I realized that my experience was not unique. There are over 100 reported autoimmune diseases plaguing millions of people worldwide. A large percentage of these people are diagnosed as young adults and will spend the rest of their lives taking medications that come with a plethora of side effects and little long-term improvements.
If you are not a chronic disease sufferer yourself then you probably know someone else who is. And if you know that person well, I’m sure you’re familiar with the cyclical behaviors we go through in order to gain some jurisdiction over our bodies.
We scan the world wide web for information, we read all of the research studies, we alter our diets, we learn about mindfulness and meditation, we purchase all the alternative supplements praying that this time it’s not just snake oil. And when these efforts fail, we suffer from yet another terrible “flare” wondering where we went wrong this time. We find online support groups and message boards that, at the very least, make us feel a little less alone.
Unfortunately, often cures aren’t found without patients demanding better and a lot of push back from doctors. Without push from people demanding better, we might still be decades away from seeing cures for conditions like Crohn’s disease and Ulcerative Colitis.
Though after speaking with many experts for Designer Shit, I am hopeful we could have better treatments for chronic illnesses within 5-10 years.
We are on our way to better treatments but it won’t be done without our own advocacy and without our speaking up on what it’s like to live with chronic illness.
At this point in time, I am still on my journey and am not sure what the outcome will be. I have been through my fair share of highs and lows living with IBD. This film does not shy away from the very scary reality of what it means to be a person living with Ulcerative Colitis and the ways in which it affects day-to-day life, personal relationships, and hopes for one’s future. At the end of the day, at the very least, I know I will come away with a better understanding of my own personal health and the power that comes from being well educated in one’s own healthcare decisions. I hope to share that sense of empowerment with my audience and give them the inspiration to carry forth on their own personal health journeys.
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