stigma – Life and Lims

Let’s stop making ‘fat’ a bad word

It occurred to me yesterday that I don’t have to use “fat” as an adjective for myself. No one does. It’s another label, and while labels are necessary for products on a shelf, they are dangerous for people. (How about this?: “CAUTION: This label is toxic for your emotional health.”)

We don’t say someone “is cancerous,” just that they “have cancer.” We are striving to say someone “has Down syndrome” (or some other disability) rather than “is a Down syndrome person.” Because that label does not by any stretch describe the whole person.

So I am not fat. I have fat on my body. Right now, I have more fat than I’d like to, because I’m uncomfortable, and part of the reason I have more fat than I’d like is that I’ve been resorting to emotional eating for a few months, and the quality of some of those foods (sugary) is making my cholesterol a bit higher than I’d like. And those are the facts.

The problem with words is that they often become loaded with associated meanings that weigh them down far more than their original, “true” meaning. Some words even become so weighed down with other associations that they change meaning entirely. This happened with the word “gay.” No longer do we even use that to mean “happy or lively.” We only use it to portray someone as homosexual.

What meanings have become tied to the word “fat”? I’d like to offer these: ugly, disgusting, lazy, shameful, embarrassing, gluttonous, gross. I’m sure you can come up with many more, and they’re all negative. What’s happened is that there is a stigma attached to the word “fat,” and that stigma, rather than “helping” obese people to get healthier through diet and/or exercise, etc. (and that’s a WHOLE OTHER topic entirely), is actually hurting us all. The stigma, the shame and embarrassment of being labeled “fat,” is actually making it even harder for those who would like to make a change in their health to start an exercise program or change a few bad habits in their diets. Shame doesn’t motivate very well or for very long. Researchers Lexie and Lindsay Kite at Beauty Redefined put it this way:

(R)ampant self-loathing, which can be partially attributed to women’s self-comparisons to unrealistic and unattainable body ideals in mass media, may very well encourage women to give up on achieving healthy body weights altogether due to the perception that “healthy” or “average” is unreachable. Studies help to confirm this idea.

It’s actually true that the better you feel about your (whole) self — including your body — the more motivated you are to take care of it in every way. But if you feel shame and all those bad words associated in our culture with “fat,” the less motivated you will be to take care of yourself.

So can we shift the stigma, remove it altogether? Can we snip the associations tied to the word “fat”? It’s going to take some hard work on everyone’s part, but it is possible. Because what we’re “doing” right now — shaming the majority of our population that’s deemed to be overweight — isn’t working. It isn’t working to make anyone feel good about themselves and it isn’t working to get more people exercising, which is truly the goal. Losing weight isn’t really the “magic bullet” we think it is, but more and more we’re learning that being fit is what really counts.

Let’s take the first step toward a healthier and happier society and cut the “fat” talk right now.

One of Robin Williams’ final gifts? Getting us talking about mental health

I love this tribute to Williams by Disney.

Four days after the devastating news of Robin Williams’ suicide, I’m still feeling the loss of someone I never even knew personally. Perhaps it’s because his genius acting work has been a part of my life pretty much ever since I can remember (oh, yes, I was watching when he first hit the airwaves with “Mork and Mindy”). I can mark important times in my life with what movie he was doing at the time; for instance, my husband and I saw “Aladdin” on our first date nearly 22 years ago. Even now, our family quotes from that movie.

But another part of the reason this event has affected me so deeply is that it strikes close to home. I started this blog to write, in part, about mental illness, to just put my own experience out there. And Williams’ death has had me thinking a great deal in relation to how I can understand it and how I want to be able to continue to share my feelings with others. There have been some poignant tributes and some spot-on blog posts and articles about suicide, about depression, about the almighty struggle some experience with their mental health. I don’t think I can do any better, but I can just share my viewpoint.

Just a few weeks ago, I participated in a study focusing on cognitive issues in women who have breast cancer (I was part of the control group). I was happy to do my part for science, even if I had to drive a few hours away to get to Stanford University. Since the study is looking at cognitive effects of cancer or the treatment for it, it included questions and assessments not only about impairment of cognitive processes overall but also about emotional status. Since I had indicated on the questionnaires and intake forms that I take medication for depression, the researcher who worked with me asked me at the end of our time a little bit about my feelings and opinions on it. She said she focuses on psychology and has noticed in her time studying it that there are still not nearly enough treatments available for depression and other mental illnesses. Some people in the blogosphere and media have wondered why Williams, for example, didn’t just “get help.”

Here’s the sad truth: there isn’t nearly enough adequate “help” out there, whether it’s in the form of medications and other medical interventions and treatments or it’s in the form of professionals and non-professionals who really are good at what they do and can give superior guidance.

There is still an epic shortage (in my experience and opinion) in the number of qualified professionals who can treat people from all economic and health-care-coverage situations. This is particularly true in the case of the number of doctors or other practitioners who specialize in and are licensed to provide medications. In my experience, for instance, there are three psychiatrists covered by my health insurance (which might also be the total of all the psychiatrists in my city), and only one is taking new patients. That one I didn’t particularly like, and it’s crucial to have a certain level of rapport with someone who’s treating you for your brain chemistry. So I was lucky enough to hear about another provider who ended up being a better fit for me, but her office is an hour’s drive from my home, and her practice is not covered by my insurance. I am also lucky enough to be able to afford paying out of pocket for her care. But what about those who don’t have insurance at all, who can’t afford out-of-pocket costs, who don’t have access to transportation, etc.? There are a LOT of people not being served.

Then we move on to the issue of actual treatments available, even when one has unlimited access to doctors, therapists, and whatever medical intervention is available. And as the researcher and I discussed a few weeks ago, there are far too few options. I’m on an antidepressant that’s worked well enough for me the past couple of years to get me to where I can cope adequately with life’s challenges without being taken down completely. But there have been times medications weren’t doing enough for me, and it was hard.

There have been at least the number of times I can count on one hand, and possibly up to two hands, moments I’ve been in the blackest and deepest abyss and felt suicidal, even if it was only briefly. And I could go on and on about how if you haven’t been there, you can’t possibly know what it’s like. Logically, in a part of my brain, I knew I didn’t want to hurt my loved ones, didn’t want to deprive them of me. (That’s addressing the “selfish act” observation…) But it was a very distant part of my brain and one that was clouded over by the overwhelming despair and hopelessness of my feelings. As I’ve written before, it’s those times and others that I now feel my brain chemistry betrayed me. And it’s a very weird, unnerving feeling to have your brain working against itself and yourself. Even though I could logically call to mind times I enjoyed life and felt fulfilled and useful and vital and important to others, to the world, I just didn’t FEEL it. And it became impossible to imagine or believe I would feel that way again.

No amount of love and support and encouraging words from others (assuming the best, that one does have that kind of support system — believe me, there are plenty who don’t have that, making things even worse) can make that feeling go away. If your brain chemistry is off, it’s off. And that’s why we absolutely MUST find more options to treat that chemistry. There are far too few options now.

I appreciated this one article on Mashable, for example, that asserted, “Finally, We’re Talking About Mental Illness Like Adults.” People have generally been very thoughtful this week as they’ve discussed Williams. I sincerely and strongly hope that this discussion can continue, that a few important good things may come from this tragedy: 1) Let’s stamp out the stigma for good. Let’s work towards a culture in which people who experience any kind of mental illness can talk openly about it without fear of being judged or misunderstood or mistreated. Let’s make it as easy to talk about as any other illness that’s more “physical.” 2) We need to push for more research into more varied medications. There are a number of drugs out there (but not nearly enough) that are made for the treatment of mental illnesses, but a lot of them are similar to each other and work the same way. Pharmaceutical companies need to branch out and work on far more kinds of medications that attack mental illnesses in different ways, from different directions, etc. 3) We need more doctors. We need more prescribing practitioners available everywhere to everyone. This will not only be the kind thing to do, but one that will contribute to reducing many other existing societal problems: homelessness, joblessness, some violent crimes.

These aren’t easily attainable goals. But we certainly need to work towards them. It will make a world of difference to millions.

Glad to read about others’ experiences with mental illness

So I was appreciative this week to receive a book to review called Pros of Prozac: A Faith-Based Memoir of Overcoming the Stigma. Given my experience in book reviewing and my personal interest in mental health issues, this book was a welcome read.

It’s a little slip of a book, just over a hundred pages, which the author says is mostly intentional, so someone interested in the topic can just get a quick overview of her experience. So I read it in one sitting this afternoon. Beca Mark writes about her experience with postpartum depression after the birth of her first child, struggling with mood and depression, and finally deciding to seek professional help and take medication for her depression. It took 15 months to choose to take Prozac, and Mark discovered two things: one, why did she wait so long while suffering so much? and two, she realized that she had actually been struggling with depression her whole life but hadn’t known it until Prozac made her feel really good and really herself.

Mark’s experience is actually what I would call fairly straightforward. She was really struggling, and then struggled with just the concept of taking medication because of the stigma it has in our society (and the real lack of open discussion of the topic in her otherwise close-knit, very large family), and then finally decided to give in and take the medicine. And in fairly short order, she just felt a whole lot better. And she has felt consistently better in the years she’s been taking it, which I’m guessing is probably about five. She makes clear that it hasn’t made her life easy-peasy or super-simple or solved all her problems. It has simply made her more able to think clearly and be motivated and to just be her best self. As I put it, it’s helped her to be able to cope in the way that most “normal” people (i.e. those who don’t have depression or other mental-health struggles) do.

Mark says this is a faith-based memoir, but it’s really not very heavy on the faith angle. I think her beliefs and the culture that surrounds those faith beliefs give a frame to her story, but even those who don’t consider themselves very religious can find a lot of value in her story. All in all, this is really a simple tale, and one that seeks simply to provide some basic information and encouragement to those who may find themselves struggling emotionally but feeling hesitant to accept that there might be a “label” for what they’re experiencing and that medication might help. Our culture at large still places stigma on mental health issues, as well as taking psychiatric medication. And individuals within faith communities may very well sometimes compound that stigma by saying that if a sufferer could just be more self-reliant or more faithful, they wouldn’t suffer.

I heartily support Mark’s goal to contribute to the general discussion and bring this topic “out of the darkness” into the light of day. The more those of us who do struggle with emotional challenges really talk openly about this and show that we’re pretty normal, typical, “good” people, and not weird or weak or something negative, the more others will be better educated, aware, and accepting — and supportive. And, even better, the fewer the number of people who do suffer from mental health issues will feel marginalized or hesitant to seek treatment. Mark really doesn’t want more people to suffer in silence and without treatment. Why should they? It’s pointless to suffer when there is help.

In applying Mark’s story to my experience, I find that mine is a bit more complex. (She does say that mental illnesses are complex in cause, etc.) Because I have bipolar issues, finding medications and treatments to keep me on an even keel can be trickier. Antidepressants help the most, but they tend to “poop out” after a year or two. I’m in that spot right now, I think. I have been on a number of different medications over the years, and it hasn’t been as “simple” (that’s relative, I know) as being able to get on Prozac and stick with it for years. I would like that a lot if it were that comparatively simple.

When it comes to the faith angle, I just wrote that there really isn’t a lot of it in here, so this book is really accessible for everyone. I wouldn’t have minded seeing more, personally. I have written about how my faith informs and is affected by my mental issues, too, and I don’t think Mark really digs into that as much as I have, even.

But bottom line: a good read, particularly for those who are “new” to the idea of having possible emotional struggles, and one that’s simple and straightforward and encouraging. Kudos to Beca Mark for putting her story out there and just being honest. The more of us who do so, the better.

So glad I could help

Few things give me greater satisfaction than having friends (or even just acquaintances) come to me as a resource when faced with questions relating to mental health. Perhaps in part it’s nice to know that, despite my sometimes quirks or slightly “off” behavior, they still consider me a valuable source of information and even wisdom. It’s nice to be valued, to be needed, to be seen as able to dispense tidbits of guidance. It’s even better to feel that maybe, just maybe, everything I’ve gone through can help someone else, that I can maybe help cut short the long journey for them just a little, provide a quicker route that still gets them to a good destination.

I can tell you about my therapists, my psychiatrists (i.e., medicine-dispensers) and medications, the books I’ve read, the ups and downs and ins and outs. I can talk about the wacky ways my mind is able to play tricks on me, despite my hyper-awareness that it can, and a sort of vigilance about trying to think clearly and navigate life from a kind of emotionally handicapped state. I can share the surreal-ness of dealing with others who have been in worse shape than I have ever been, of their living in (and trying to reason from within) realities that just don’t line up with the reality the rest of us know. I can look back on my own experiences and say, “I wish I could have seen the whole picture from the beginning, because I would have gone right to ___.” Man, does it feel good to think that I might be helping someone jump over hurdles with relative ease and speed that I’ve had to walk around, re-jump, and move around countless times.

Again, in this latest discussion, a friend and I agreed that it would make life so much better for everyone if all of us could just open up about our real challenges. Most of us have something, a weakness or an addiction or a habit or an illness, whatever, that we find embarrassing or shameful somehow, that we would really rather NOT talk about. And there are plenty of stigmas left in our culture about lots of problems, including mental illness. It just doesn’t help that there aren’t really clear-cut answers (let alone even questions) about how our minds and emotions, etc., work. The science is much clearer with other health problems. So it makes mental illness still hazy and misunderstood and even a little scary for people who don’t have to face it head-on regularly. If just more of us SPOKE UP! Whatever your shame, your stigma, your weakness, your difficulty, just talk about it. Yeah, unfortunately, you’re probably still going to be judged and misunderstood by some, maybe many. But you could help so many others.

I feel so weak and so isolated sometimes, and then nervous about talking about my experience. Because like most everyone, I just want to be liked, to be understood, to be respected and appreciated. And that stigma can put a big roadblock in the way of that satisfying goal. But I want to help other people. I want to pave the way for less stigma, for more understanding, even for better science (somehow). So, I talk. I write. I blog. I’m open. It can be nerve-wracking and painful. But I’m doing it anyway. Because I’m glad I can help. So call me or write if you have questions or need advice for a family member or friend. Reach out. Sometimes you might need oven mitts, but pretty much I’ll always be happy to talk, if I can help someone else.

What’s in a name?

So I’ve thought a lot about how difficult it is to just put a name on what I experience. For years, I really wasn’t sure what I had, as I mentioned before and will need to write more about. So if it was hard for me and doctors to label my condition, then explaining it to others is even more of a challenge, even now. Then, even if there is a name, communicating correctly to others so they will really understand is even more challenging.

For a comparison and introduction to my thoughts on this topic, I have a daughter who has Down syndrome. Over the years as I’ve been involved with organizations that advocate for people with disabilities and have spent time talking with other parents, I have been actually very grateful for the fact that my daughter has a very straightforward diagnosis. I’ve met people whose children obviously have cognitive challenges but who have spent hours and hours in doctors’ offices and with other specialists, trying to determine just what their child is dealing with. It’s vital to have some kind of diagnosis in hand in order to effectively move forward with some kind of treatment and/or (especially) educational plans and specialized services. It’s no doubt sometimes a challenge to have a child with a disability (again, whole other topic here), but it seems to me that it’s even more difficult when you can’t put a name to it. I’ve had 14 years of knowing I have a child who has Down syndrome. She’s received the services she’s needed, by and large, over the years, and it’s been relatively simple to make those happen.

What makes her situation simpler also is that her condition is easy to observe on the outside. The physical characteristics that are signature Down syndrome traits are literally written on her face, and pretty much everyone knows by looking at her that they should have some types of different expectations from her. I don’t want anyone to think that I want people pre-judging my daughter or having low expectations for her because that’s not at all what I’m trying to say. But when she behaves a little differently than most people and hugs everyone and talks with a bit of a speech impediment and so on, I can feel fairly comfortable knowing I don’t have to try to explain away what she’s doing because many people will already know there’s a reason to cut her some slack behavior-wise.

A similar “rule” applies to people who have physical disabilities. Many of those can easily be observed; if someone is in a wheelchair because of paralysis or uses a cane because of a limp or even has a seeing-eye dog because of blindness, that person instantly can communicate without needing to say a word that he or she has a particular challenge to which others might need to be sensitive (although they generally just want to be treated like everyone else, their situations are at least fairly clear to others, and then others can choose how to be most sensitive and kind to them). But mental health issues are completely invisible. No one can tell by looking what someone who struggles with mental illness is having to cope with.

The companion issue is that mental illness simply is not as readily understood as physical illness. Each individual in this world has a package of trials and difficulties (as well as talents and skills and interests) that is unique. Some face tremendous trials in this life. Some are open about some of the things they face, and others prefer to be quite private, sharing details or even basic information with very few others. So some people who are diagnosed with cancer will talk readily about their illness, their treatments, their prognosis, their fears and frustrations. Others will keep quiet. But those who do share more, for instance, a cancer diagnosis, will likely be quickly understood. “Cancer” is a word that is easily communicated in our society; listeners will think “chemo,” “surgery,” “radiation,” “sick,” “death” or “remission” when they hear it. They will feel compassion and a desire to help, perhaps with meals or rides to a doctor or something similar.

On the flip side, however, is mental illness. Mental illness today, with its various diagnoses like schizophrenia, depression, bipolar disorder, and so on, is coming out of the darkness in a way; more people talk about it in society, but it’s still not as easily understood as physical illnesses. There is generally no stigma associated with illnesses like cancer (although, frankly, there can be a bit with some illnesses that can be linked in part to unhealthy habits), but there is lots of misunderstanding, confusion, and stigma associated with mental health. Either people think that mental illness really doesn’t exist and a sufferer is “making things up” or trying to get attention or something else, or they think that their mental problems are bad habits that just need to be broken. Someone with depression could be told to look on the bright side or to just force themselves to get out and about, for example. Or others may simply recoil a little bit from someone who has a mental illness; they may be seen as weak or “crazy” or “scary” or unbalanced. Mental illness can make others feel uncomfortable and nervous, rather than compassionate and eager to help and lend support.

So back to the name. When I have chosen to share with someone, briefly, that I deal with issues of mental health, first, over the years, I wasn’t sure what I did have, and now that I (basically) do, I still can’t just say, “Well, I have atypical bipolar disorder or bipolar II.” No one knows what that means. Communicating requires that both people understand the meaning of a word. Like I said before, if I say, “I have cancer,” I can pretty much leave it at that and someone else would know what I meant. But if I wanted to briefly mention, “I have bipolar disorder,” half of people wouldn’t know what I meant. Even if they did, my version of this “spectrum” is practically unique to me, so it would require several more paragraphs to get across a basic meaning that one or two words couldn’t convey, as “cancer” would for that illness.

What’s the upshot? It’s just a lot easier not to ever tell anyone what I deal with. One, I can’t say it quickly and move on to other topics. Not possible to communicate what I need to quickly. I might find someone who is very sensitive and eager to talk to me about it, but it’s going to lead to at least a 15-minute conversation, and sometimes there’s no time for that. Two, if I do say what I have, and someone else basically understands what I’m talking about, there’s always a possibility they may have a negative connotation in their minds that will lead them to make judgments about me that I’d rather them not make.

On my bad days, I’d be happy to stay at home, keep to my bed, and refrain from human interaction so as not to offend or cause any problems. But many of those days, since I do have four kids and lots of responsibilities, I still have to be out and about, getting things done. I’m then more likely to be impatient or super-irritable or sometimes just want to cry over something dumb that wouldn’t bother a normal person (or me at some other time) at all. It’s those days I wish I had a sign on my forehead that just says, “Please excuse me. I have a mental illness; I do my best to deal with it constructively; I take medication, I see a therapist regularly, I try to relax and take care of myself as much as I can given my limitations. But I have a family; I have responsibilities, and life goes on. I’m standing in this line that has taken forever and it’s making me feel completely at the end of my rope. I’m valiantly doing what I can here, but my best on this kind of day isn’t too great. Please give me some leeway and smile at me encouragingly or just try not to judge me.” But my forehead isn’t as big as a billboard (thank goodness), and this sentiment wouldn’t fit on it.

So no, there is no outward sign of my inward distress to give people around me (strangers or friends) any indication of what I deal with regularly or if I’m having a bad day in particular. (Very close friends will understand if I just say a few words because after years of talking and explaining, some shorthand will work. But this only applies to a handful of individuals in my life. You know who you are.) There are no physical indications, no typical characteristics to tip anyone off. And if I were to say something to someone else, I couldn’t really capture the essence of what I want to convey in just a few quick words. It’s frustrating. Again, this is all part of why I’m writing on this blog. I’d like to extend to others who don’t have my particular challenges the kindness of helping them to see more clearly from my viewpoint, all at their leisure whenever they’d like to read this. And for those who experience similar feelings, I hope you can feel a kindred spirit.