Talking about/to fat people.

Hey Dad,

I don't mean to keep coming back to issues around obesity since I am focused on diabetes, but there's no way around it.  No matter where I look in my research I am no more than one step away from obesity--as a cause of diabetes, barrier to effective diabetes treatment, or a moral failure of the patient.

A couple of posts ago, I wrote about the problem with "diabesity," and I got a few high-fives for it. The thing people who are heavy talk about most with me is their frustration that doctors think that because they're heavy they are necessarily sick and that their weight will absolutely lead to diabetes and other conditions later on.  I know many healthy people who carry a lot of weight; they are still fully functional in terms of their ability to move and work.  Even into their 40s, they don't have issues with blood pressure, cholesterol or diabetes.  Some people are just bigger than others.  There are a lot of activists working to change the way the general public and the medical field see fat people because it just isn't so simple.

Since I spend so much time looking at the scientific research on obesity, I can see where doctors and other practitioners get the idea that having significant extra weight makes people sick (a lot of the time it actually does), but like so many other things that are driven by supposedly objective science, it is only part of the story.  I don't know how many times I have experienced unwanted discussion of my weight (since, despite a few decades of effort, I'm still a little fat) at a medical appointment when I was there for a sinus infection.  My experience is not unique.  I regularly hear from people how much that specific conversation keeps them from making an appointment even when they know that they need to go to the doctor.

The thing is, doctors are not the enemy; they are trained to behave with less compassion and it is only recently that any real attention has been paid to bedside manner around obesity.  In fact, the topic of obesity has been controversial for the American Medical Association, the main authority over the practice of medicine in the U.S. The shift in thinking about obesity as a disease means that now doctors have an obligation to bring it up in medical visits with patients, something they are woefully unskilled at as a whole.

I've been dreading what this means for people who already don't want to go to the doctor because they don't want to be lectured about their weight and was delighted to hear a talk at the American Association of Diabetes Educators (AADE) conference a few weeks ago that gave me hope that doctors can do so much better.  Dr. Arya Sharma of the Canadian Obesity Network presented a set of tools that they have put together to help physicians have productive, respectful conversations about obesity:  The 5 As of Obesity Management. In this model, they start with asking the patient's permission to have the conversation and then proceed to assess the degree to which obesity is actually causing illness or disability, moving far beyond the BMI measure that most practitioners use, the Edmonton Obesity Staging System.  In this video, Dr. Sharma talks about the stuff that got me most excited at the conference.

So all of that is to say I'm excited that there are researchers and clinicians trying to make it easier for us to get medical and other professional help for losing weight when we need it.  I'm also hopeful that doctors and their staff will become more compassionate and will have better tools for having these sorts of difficult conversations in respectful ways.

After all, if we don't feel respected by our doctors, there's no way we're going to listen to them--even when they might have something relevant to say.

Love,

Mel

Diabetes and your right to work.

Hey Dad,

A few weeks ago, I had lunch with a friend who has type 2 diabetes and has been having a rough time at work.  She's not had much luck with oral meds, so she's been trying different types of non-insulin injectables over the past few years.  The latest one has been a really rough adjustment and has caused her to take time off of work--eating all of her paid time off very early in the year--and to have incredibly personal conversations with HR about what her needs are regarding going to the bathroom (GI problems are common in people with diabetes and some medications intensify them) and testing.  For a lot of folks, going to the bathroom however often they need to isn't a problem, but she works in a call center, so they pay attention to the time she is available for calls.  In my friend's case, the accommodation has been extra bathroom time and she's had to rely on FMLA leave due to extreme side effects, but it's much more involved for people with complications.  She's lucky to have health insurance and a clean place to test and do her injections, but she is still stressed about the effects of controlling her diabetes at work.  It took her a while to get this job and even if she doesn't enjoy it, she needs it.

I can't imagine how difficult GI side effects from diabetes meds must be for people who don't work in an office, who are on the road and need to stop off frequently, or who work on a job site that doesn't have plumbing.  I don't know about you, but one of the last things I want to discuss with my employer is my bathroom needs.  Frankly, I don't want to discuss my health problems at all where I work.

This got me to wondering what kinds of accommodations employers are required to provide for people who have diabetes.  Here's what I found.

Diabetes is a diagnosis that is included in the Americans with Disabilities Act, so employers cannot legally discriminate against persons with diabetes.  It wasn't initially included in the act, presumably because not all persons with diabetes are disabled by the disease, but that changed in 2008 due in to the increasing prevalence of diabetes in working-age people and the efforts of organizations like the American Diabetes Association.  In fact, they have a thorough section on their website devoted to the topic of employment discrimination and they put out a report that addresses a lot of employers' concerns about the safety issues around having employees with diabetes.  It is such a big deal that there is even a government sponsored website all about diabetes in the workplace, primarily geared toward employers and occupational health professionals.

These are all great for knowing what your legal rights are, but what does it actually mean for working people?

The thing is, these legal rights don't apply if the employer doesn't know a person has diabetes--and there are all kinds of reasons that people don't want anybody, much less an employer, to know that they have it, especially stigma.  I know we've talked about how much your employer knows about your health problems and you've brought up some very real concerns about whether management would use it as an excuse to withhold the best earning opportunities from you or if they would assume you are unsafe on the job even if your diabetes is well-controlled.  Your fear is reasonable because that sort of thing happens a lot.

Last night I was hanging out with a bunch of diabetes educators as part of the AADE conference and had the chance to ask them if they've had patients talk about problems getting accommodations at work.  All eight that I asked said yes and that it was a big problem for their patients.  Most of what they see is that even with the change in the law, patients who need their jobs the most, like you, regularly have to make choices between taking care of themselves and keeping their jobs.  It sounds like it's extra hard on 3rd shift workers because their schedule is all goofed up to begin with.  I was talking with four educators from Connecticut and they went on at length about the problems their patients who work at Walmart face, in particular.

"Walmart is the worst.  Unless they work a full 8 hour shift, they don't get lunch, just a 10 minute break.  Our patients need to eat more often than that and there's just no time for them to eat once they get off the floor.  It's the worst for gestational patients."

So what can you and other working folks do about it?

First, do your best to avoid needing insulin.  Eventually, it is quite likely that you will still need insulin despite your best efforts, but there is a lot you can do to avoid or slow down the need for it. Keep eating well, testing your blood sugars, and taking meds when diet and exercise are not enough. The key is controlling the disease so that you can slow down its progression.

Second, it sounds like the bottom line is you can't be protected by the laws if you do not disclose.  If you need an accommodation or you go on insulin, you have to disclose it.  The laws that would legally allow an employer to prevent you from doing a particular job, as it is related to diabetes, pertain only to folks who take insulin.  In that case, the employer has to demonstrate that episodes of hypoglycemia would be dangerous.  Kris Halpern, "the diabetes attorney", notes that even if you disclose to your employers, you still need to let a co-worker know what happens if you have a low because management's policies aren't necessarily carried out by the people who would be your direct supervisors (see the comments at the end of this very useful article).  You will have to be prepared to educate the people you work with about your disease because there's a very good chance they won't know about it or they will have misinformation.

Third, do everything that you can in writing because if you ever need to go to court you will need documentation of what happened.  Because you're a union member, make sure your shop steward knows what's going on.  The union has been good about protecting your job when you've needed time off for kidney surgeries and I imagine they will continue to fight for you if the time comes that you need to go on insulin.  You might want to consider getting involved in leadership to help ensure that this will be the case.

I hope that getting this information helps you feel better about letting people you work with know what's going on with you.  It's hard to keep secrets from people, especially when they are such a big part of your everyday life.  There may still be some grief from it, but you are within your rights to expect reasonable accommodations and they cannot legally fire you for having diabetes.

http://www.rv.net/forum/Index.cfm/fuseaction/thread/tid/26353957/

Most of all, dad, you need to worry about taking care of yourself so you can enjoy your eventual retirement.

Love,

Mel