I and a fellow endocrine sufferer, who I appreciate very much, shares her common experiences with hormonal health challenges and size acceptance. We agree on much. [My questions in blue] Read on:
1. Describe your experience with size acceptance, what did you find positive about it, what did you find negative?
I originally joined the size acceptance movement in 1996. After purchasing my first personal computer and joining the citizens of the internet from home, I stumbled across the Dimensions Magazine website that broadcast the statement: Where Big is Beautiful. The print magazine articles were written by men and women who took pride in themselves as a whole person. This was a new discovery for me, having been a fat teenager and dealing with discrimination, bullies, and general bias because of my size.
I spent a few years mostly reading and studying materials from the NAAFA and Dimensions Magazine, and researching the phenomenon that is fat acceptance.
Over time, I began to learn that for me, the journey to "Size Acceptance" is really a journey of "Self Acceptance" rather than coming to terms with being just fat. As a person, I learned from the SA movement that I have a right to enjoy life just as I am. Since that time, I've even been able to help friends of all sizes come to terms with their own bodies. It's been an interesting journey. When I tell women with low self esteem that I love my body and who I am-- they begin to wonder how "I" could love myself, when they see me as socially unacceptable!
Things I learned from SA:
Doctors usually believe you're fat because you're lazy. Little research and questioning is done for fat people. Diet and exercise are the common prescriptions. Many fat people then turn to alternative medicine or "acceptance" of themselves and then fail to get help! Fat and sexuality are not mutually exclusive. Many people can and so see through the fog of the myth that fat people are somehow second-rate.
My opinions matter, no matter how fat I am! The anonymity of the SA movement online has helped many fat people find their confidence and ability to speak in regards to various issues. I think this has helped the most in fat people learning to advocate for themselves. They know they're not alone, and can voice their opinions.
Society still has yet to accept fat people as the norm in America. Theater seats are uncomfortable, airplane seats and being asked to purchase two seats is the norm. Bathroom stalls are too small. Stairs are too steep. Booths at restaurants are made with fixed tables. Hospital gowns for fat patients are hard to find (and you're made to feel like a freak if you ask for a larger gown at times). Chairs at airports and doctor's office have arms that can cause physical harm to a fat person.
There's a bias in America that fat people are nonsexual. That's so far from the truth! We are human beings just like everyone else, and we have carnal desires, wants and needs to be loved, feel affection and physical attraction. The lies that are perpetuated by the media don't help any.
Size Acceptance has its own militant activists just like every other agenda.
I am still a member of the SA movement, but left my formal advocacy agenda in late 2008.
2. How did you come to be diagnosed with Cushings?
When visiting a new doctor one day in 2007, I was bemoaning to my doctor that for years I'd been battling a host of issues that I thought were just normal things for a fat person. After years of being told that I was fat, lazy, an over-eater and I would have to deal with my health issues -- this new doctor started to ask questions. Every answer I gave created a new question. At the end of an hour-long exam, the doctor asked me if I'd heard of Cushing's Disease. I hadn't yet, but then she explained the textbook symptoms.
The trouble from that point was that local doctors aren't trained in what to do with Cushing's patients, and you have to find an Endocrinologist that understands the disease. There are few specialists who truly understand the full body of research in regards to this endocrine disorder. I saw two local Endocrinologists who laughed me out of their offices despite my doctor's referral. Finally, after much research on the internet and talking to my doctor, I found Dr. Ted Friedman in Los Angeles. Dr. Friedman took the time to meet with me, look at my history of pictures from spanning from current days to my childhood, looked at all of my physical signs and symptoms and prescribed a very focused and intricate testing regimen. After only 46 days of tests, MRIs and discussion, it was decided that I had been living with this disease some call the "Ugly disease" since birth.
Since that time, I have had two pituitary surgeries to help establish a period of remission of all of the difficult symptoms. After each surgery I've enjoyed 6 months of improvement.
3. Do you feel support was lacking in the size acceptance community regarding your diagnosis with Cushings?
Once I shared my disorder, the problems it caused for me, and that I was pursuing a cure for my issues, things began to change for me. When I announced I was having pituitary surgery to work towards a cure, I was treated like someone who didn't know what was right for myself. Constantly people were telling me reconsider such a "drastic surgery" that they felt could leave me crippled for life. Despite all my assurances that I looked at every angle, I received countless phone calls, emails and visits from people who insisted I was making a wrong choice. When I needed support the most from my friends, a dichotomy arose -- that of having to deal with friends who felt I was fat for life, and that of trying to cure a deadly disease.
4. Do you agree that in size acceptance there is a lack of truth about obesity being for some people a symptom of a disease process?
Many of my fat friends categorize their fat as a physical trait, and refuse to believe that obesity is a serious medical condition.
While I personally believe a rubenesque woman can be fit and fluffy, there are many fat people who have serious medical conditions that may go undiagnosed because of their attitude towards size acceptance, their fear of the doctors being emotionally cruel to them, and that there aren't any real serious medical diseases for fat people.
In many circles in the SA community, the talk of "dieting" is forbidden. The reason being that fat people need a place of solace from the people telling them that diets will solve all their problems and they refuse to diet. I can see the point in this argument, but the people that can't diet to lose weight have serious medical issues that should be addressed! I'm sure some people who say they diet really don't and they are fooling themselves, but people like me who eat only 1100 calories a day and gain weight have metabolic disorders that need serious help!
Diseases I've seen friends suffer with from obesity related issues:
Lypo/Lymphadema
High Blood Pressure
Heart Attacks
Deep Vein Thrombosis
Diabetes
Osteoarthritis
Osteopenia
PCOS
Cushing's Disease
Hypothyroidism
Growth Hormone Deficiency
The website bigfatfacts states: Weight is not a barometer of wellness. More Americans die every year from weighing too little than from weighing too much. An estimated 25,000 people die from obesity. Moderately overweight people live longer than those at normal weight. (Flegal, et. al.) (See reference notes at bottom of report)
Weight is not a barometer of wellness! So a fat person can have normal blood pressure, activity level, blood sugar, and labwork. But notice here it says moderately overweight people live longer. Most of my friends in size acceptance are overweight into the hundreds of pounds. Dear friends of mine are over 400 pounds, and one is over 500. Somewhere fat does become a barometer for wellness!
5. Where do you think the size acceptance movement is headed today? Do you think it has a future?
Size Acceptance is splintering into various new groups and is no longer a united front. Some advocacy groups want fat to be declared a disability, yet some don't. If it's a disability, then is it not healthy then? Other groups are insisting that super-sized people shouldn't be part of mainstream size acceptance as they are the "freaks" of the movement.
These kinds of separate attitudes don't do any fat person any good, and it's a shame to see that happening. I wish to think that in the future, we'll find a better united front and be able to be inclusive again.
very good interview; yes, if the superfat condition is hiding a medical problem,then all those LAZY doctors now days, who refuse to diagnose anymore (and there are a ton of them)probably should be sued for malpractice.
ReplyDeletelegally, wrong diagnosis"you're just lazy,and eat too much,not sick"like this one, from a doctor,is grounds for malpractice suit. Look it up, yeah, it's malpractice. but contemporary doctors CAN'T BE sucessfully sued; i looked into that,too. they can make so many errors, you die, and the courts still will not penalize them. the AMA is such a monopoly,no one can punish bad doctoring now. Often patients in the US have to do their own diagnoses, via the net, doctors refuse to do it.
here's one of the most used:"i'm sending you to a psychiatrist,it's not medical."--is code for--"I'm not wasting my time diagnosing and treating you, get out!"--and often HMOs or over-stressed clinics for low-income, do this; they DUMP YOU.I predict many of us will be driven back to private doctors,we'll have to pay cash to.why? doctors hate govt. insurance, and HMO'S, and they all stopped taking medicare.
so if doctors refuse to diagnose you,and blame you, tell em to go to H, and hunt for an honest one.it's not you,it's THEM.I lost my respect for doctors.