I spent some time over the last couple days looking at the Obesity Action Coalition, and listening to podcasts by a couple of their members. Something, I am not sure what, set off the "advocacy" switch in my brain recently, and, just like I did with the Epilepsy Foundation, I am wanting to get myself plugged into the larger world of community and political activity around another issue I am personally invested in.
Here's the thing, though: I feel kind of weird getting involved with the OAC, or any other obesity advocacy group right now. Why? Because I am getting ready to have a surgical procedure to begin correcting the condition in a few short weeks. It is as if I was joining La Raza right before I had a DNA procedure that rendered me 100% Anglo - at best I would be a concerned outsider, no longer a real part of the group. I feel like I am about to lose my "tribal" status.
It is hard to describe the importance of self-identification that comes along with a disability like Epilepsy or Obesity. In many ways, the condition is larger than the person you are. I am not a veteran, but have heard vets talk about how "if you weren't there, you don't understand." That is exactly how I feel about the conditions I have been fighting for most of my adult life - a small group of people really get it, and the rest may be concerned about it, but they won't ever understand what it is like to be a part of the "outsider nation". They won't understand the constant efforts (and failures) to gain control of your health, they can't have experienced what it is like trying to get help through our fractured medical system, they have never been laughed at or shunned for being different the way we have. It is almost a reverse form of class elitism, looking up from the very bottom rungs of society.
But, if you haven't been through it, you don't understand.
The crux of my problem is this: I will always self-identify as a person with Epilepsy (or as "an Epileptic", on bad days.) There is no cure for it, no process exists to remove Epilepsy, or place it into remission. Even if I should ever enjoy 100% seizure control, it will be through surgical implants, daily applications of mind-numbing drugs, and constant vigilance - not because I wake up one day and have been cured. I will remain a part of this tribe forever - advising newcomers and their families, staying on top of news about developments and potential treatments, driving my elected representatives crazy by staying plugged into the politics around research and treatment.
What happens, then, when I take the "off-ramp" from obesity via bariatric surgery and the lifestyle changes that accompany it? Am I still suffering from the condition? Am I moved over into a "Veterans" or "Survivors" group - still having something relevant to add to the community? Or am I simply now someone who was a part of the community, but left - a person who joined the ranks of those who don't understand what it is to be Obese?
There is nothing wrong with being active as an advocate for a group you are not a part of. It is an important part of education and empowerment for those whose voices are not being heard. But it still feels to me, right now, that I am going to become external to the experience. American skinny culture, fat shaming, and bullying of obese kids are no longer going to be my issues, but the issues of a group I happen to care about. I will be standing with a group, but I will no longer be a part of it.
One of the first things a good doctor will tell you after your diagnosis of a disability is some version of "Don't let your illness define you." It may not be my definition, but it most certainly has shaped my community. And I feel very strange about potentially leaving the community I have been a part of for 25 years.
Wondering If I Have To Surrender My Tribal Membership,