In 2001 it was estimated that 46% of the global burden of disease was chronic. Despite the fact that living with a chronic disease is becoming increasingly common, many remain difficult to treat and manage. As incident rate of these illnesses has skyrocketed, study and treatment have been slow on the upkeep.
There are many people out there who are using their voices to push for better treatments for their chronic conditions. In this weeks blog we want to highlight why it is so important we break the silence on our chronic illnesses.
- Breaking my silence
- Why it is so important to be outspoken on our conditions
- People we admire for speaking out
- Our mission
First, I’d like to talk a bit about my condition and why I’ve come to believe it is so important to share our stories.
Breaking my silence
Nine years ago when I was diagnosed with Ulcerative Colitis, I never thought I would find myself talking about it publicly, let alone featuring it in a documentary film. As an otherwise healthy 22 – year – old University student, I was shocked and dismayed that the label “chronic illness” had been added to my medical records. I naively believed that the frightening (and often embarrassing) symptoms I was experiencing would not last. I held steadfast to the hope that I had been misdiagnosed, or that I would be one of the lucky few whose disease magically dissipated despite all odds.
As the years passed, my symptoms progressed and the naivety of my youth dissolved. I stopped thinking of myself as special. There are over 100 diseases that fall under the “autoimmune” category. Many of us are diagnosed as young adults and spend the rest of their lives taking medications with varying degrees of improvement and varying degrees of side effects. If you are lucky enough not to suffer from a chronic illness, I’m certain you know someone who does. And if you know them well, I’m sure you’ve come to understand the cycle of behaviours that we go through in order to gain some sense of control over our conditions.
We scour the internet for information, we read the research studies, we experiment with our diets, we take up mindfulness techniques like meditation, we buy the alternative supplements hoping this time it’s not just snake oil. And when all of our attempts fail, and we end up in another nasty “flare”, we wonder what we did wrong this time. We log onto the message boards to give and receive advice, support, and hopefully feel a little less alone.
Why it is so important to be outspoken on our conditions
Unfortunately, often time’s cures aren’t found without a lot push back from doctors and patients demanding better from pharmaceuticals. Pharmaceutical companies stand to make millions off chronic conditions each year, so finding “cures” is not necessarily a top priority for them.
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 the many experts I did for Designer Shit, I am hopeful we could have better treatments for chronic illnesses within 5-10 years.
Yes, 5-10 years is still a while but it is pretty good when you consider all the bureaucratic hoops one has to jump through to get drug and treatment approval from regulatory bodies like the FDA. We are one 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,
People we admire for speaking out
In an interview with GMA’s Robin Roberts, Selma Blair spoke about her MS diagnosis and showed us a side of the disease that we are so often shielded from as a society. She did the interview in the middle of a flare up in her disease.
Some of the symptoms of a flare up in MS include slurred and poorly articulated speech, muscle spasms and balance problems, which were on visible display in the interview. The interview is at once difficult, empowering, saddening and thought provoking to watch. Blair approaches her condition with a level of poise not seen in most “well” people.
Selma Blair showed bravery on a grand scale but I also witness brave “regular” folk everyday, sharing their stories and providing support to chronic illness sufferers. I see them in my forums, on Instagram, on my Facebook, etc. That is to say, we can all have an impact on making chronic illness a little less lonely because I know that many out there have had that effect on me.
In Designer Shit 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.
At this point in time, I am still on my journey and am not sure what the outcome will be. I have been through many highs and lows with this illness over the past nine years. This film does not shy away from the very scary reality of what it means to be a person living with a chronic illness and the ways in which it effects 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