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People Living With Obesity Need a Voice



sharma-obesity-con-logo6This week, the 4th Canadian Obesity Summit will again bring together over a 1,000 obesity researchers, health care professionals, trainees, decision makers and other stakeholders with plenty of opportunity for networking, exchange of scientific knowledge, professional education around all aspects of obesity prevention and management.

In this day and age, such an event should not be happening without also engaging and hearing from the people who live with this problem.

This is why, the Canadian Obesity Network has worked hard to identify and encourage a handful of Canadians, who have struggled with obesity (and still do) to attend the conference and share their first-hand stories with the other attendees. While I have no doubt that the conference will benefit from this “engagement”, I must also readily admit that finding this handful of brave and committed “volunteers” is anything but easy.

It is evident that the bias, shame, blame, and discrimination that surrounds obesity is so pervasive that very few people living with this disease apparently have the courage to stand up and publicly share their stories and “demand” help and support for dealing with this condition.

To me the question boils down to the simple issue of whether or not, someone who is struggling with obesity and its consequences, is as deserving of help and support as the person living with heart disease, diabetes, cancer or anything else.

Not only are all of these other conditions “preventable” and largely driven by lifestyle but also have complex biologies that make their management anything but easy – obesity is no different.

The only difference is that while heart disease, diabetes and cancer are widely “accepted” as “legitimate” diseases that “deserve” treatment, obesity is not.

This must change – but the only thing that will change this is when people living with obesity stand up for themselves and get “engaged”, not least in supporting organisations like the Canadian Obesity Network, with its impressive track record of tackling weight bias and promoting a better understanding of the science of obesity.

Can the Network help kickoff and support this process of patient engagement?

If not, it will not be for lack of trying.

@DrSharma
Toronto, ON

8 Comments

  1. Nothing will change until they stop calling fat people liars, and the profit motive behind the failed answers is not held as the highest priority. I spent 17 years trying to find out why I was so overweight and this means years of suffering and almost dying of leg infections before finding out I had Lipedema Stage IV which is a rare fat disorder. The doctors even had discovered the endless “fatty tumors” throughout my body as early as 2000. My blog was started even to find out what was wrong with me 5 years ago and I achieved that goal. The diets are failing, many of us eat normal amounts of calories–I track all my food and follow a nutritionist and we are still fat and judged by society. They think everyone’s body works the same. Nothing will change for the better until the stigma is removed and fat people are BELIEVED.

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  2. This is such a dicey issue. It is great that you are giving a voice to the most important people in the discussion.

    Here’s the problem. At least in the US, most of the doctors who have come around to thinking that “treatment” is okay — that a person doesn’t need to lose weight before getting help — are still practicing the equivalent of applying leaches. In some ways, they are so ham-handed and biased it would be better if they just remained out of the picture, but they do not self-select out. And patients who have found their voice are subjected to such bad medicine. Doctors frequently recommend intestinal surgery too quickly. They don’t counsel patients with the care and time commitment it requires.

    Part of the problem is that your specialty isn’t recognized as a specialty at all. Every doctor thinks he or she knows obesity, but that’s NOT the case.

    Good luck to you. This is a step in the right direction.

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  3. Is there still a need for volunteers? I am interested in speaking on this topic.

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  4. Hello, You might have already thought of this, but you might get a better response if you offer teleconferencing or video conferencing as opposed to asking an obese person to stand up on a stage or appear in person.

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  5. I will stand on stage and share my story of living with obesity, which mine too is due to lipedema. But no matter the cause of excess weight all patients deserve access to healthcare, and to receive needed care in respectful dignified manner. I was part of an ePatient panel at Mayo Clinic Social media week, many medical conferences are now including the patient perspective, it’s wonderful you have done the same. I hope Obesity Week will do the same in November.

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  6. This post struck a chord Dr. Sharma–somewhat flatly. I am a public health research and evaluation specialist. I whole-heartedly agree that people with obesity need a voice and a space to share their experiences so that our communities can hear and support them, and, most important, know them as “a person” rather than “a diagnosis”, or worse, “a category”.

    You have written at length in defense of shifting away stigma so I won’t beleaguer that point. What I want to say is that I’m disappointed that you asked people with obesity if they would stand on the stage and tell their story at the Summit. I can’t imagine anything more terrifying really but perhaps that is my own bias. Your prominent position could (inadvertently, I know) pressure someone to step forward. At the very least, the reticence from the community to volunteer should be an indication of how difficult this could be and should cause you to pause and question whether there could be a different way. I suggest exploring the number of qualitative methods that have been successfully used to encourage and empower the voices of other marginalized groups, those with mental health issues, those living in poverty, Aboriginal peoples etc. There are many platforms (photography, art, narrative stories told using video, dance, drama) that use participatory approaches to share stories that resonate with our communities to create a culture of understanding. And change. Often, in our quantitative world, we disconnect the body from the soul. Art is a way to bring that back into the fold and make us whole.

    By way of this comment I encourage researchers to consider and use additional methodologies, alongside quantitative ones, that will shape a more inclusive community through co-creation. Work with people. Remember, first do no harm.

    For those who have volunteered to speak at the Summit, I know you can’t see me, but I am giving you a standing ovation. I am so admiring of your courage.

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