HAES Heroes: Joanne Ikeda

Joanne Pakel Ikeda

This post is to remember and honor one of our Health At Every Size® heroes.

Joanne Pakel Ikeda died on November 27, 2018 at age 74. She was a faculty member of the Nutritional Sciences Department at the University of California, Berkeley, for nearly 35 years. She helped students gain knowledge and skills in nutrition education and counseling.

She was well-known for her advocacy for the Health At Every Size model. In fact, she and Frances Berg coined the phrase. From her obituary:

Joanne was known for her role in the development of a new approach to weight management entitled Health at Every Size® (HAES). Mid-career she came to the conclusion that subjecting large people to food restriction, body dissatisfaction, and size discrimination was futile and only resulted in physical, psychological and social damage to these individuals. She and others determined that rather than focus on weight, the focus needed to be on health. Research showed that many large people could improve all aspects of health with lifestyle modifications unaccompanied by weight loss.

The idea to focus on health instead of weight was a radical, transformative notion in the field of nutrition and medicine and turned the field on its ear. While it has gained a great deal of traction, HAES sadly remains radical to many in those fields, but she never backed down. She was especially determined to protect children from becoming casualties in the “war on obesity” by promoting a Health at Every Size approach for them instead. Here is one of the posters she lent her support to.

Joanne fought hard for size acceptance for all ages and spoke at many conferences and other occasions about Health At Every Size. She worked with NAAFA (National Association for Fat Acceptance), which is where I met her. She helped establish ASDAH, the Association for Size Diversity and Health. She backed up her beliefs with action by testifying before the San Francisco Board of Supervisors about an ordinance banning size discrimination in employment, housing, adoptions, jury selection and other domains. That took guts.

Joanne did not just specialize in weight-related issues. She also studied the nutritional habits of various ethnic groups, immigrants, and low-income people in California and developed culturally sensitive nutrition education materials. She was a visionary in her field in many ways.

She accrued so many honors, I will only list a few here. She served as President of the California Academy of Nutrition and Dietetics, then was elected President of the Society for Nutrition Education and Behavior. She was co-founder of the UC Berkeley Center for Weight and Health. In 2018 she received the Helen Denning Ullrich Award for Lifetime Excellence in Nutrition Education.

I had the honor and pleasure of hearing Joanne speak in person and getting to chat with her afterwards. She was a warm, unassuming person, but she also knew her research and her points were evidence-based. She was very modest and humble but she also knew how to make a vehement rhetorical point when needed and wasn't hesitant to call out medical professionals on their assumptions and errors. She gave me lots of warmth and encouragement for my work on pregnancy in women of size, which was much appreciated as pregnancy is very much an overlooked area in HAES and size acceptance. As a parent, I particularly appreciated her advocacy for higher weight children in the midst of virulent anti-obesity public health campaigns.

Joanne Ikeda was a god-send to the size acceptance community and people of size, and we will sorely miss her presence and influence. Our hearts go out to her family and friends.

Resources

Obituary: https://www.legacy.com/obituaries/sfgate/obituary.aspx?n=joanne-ikeda&pid=190873802

Articles:

• https://blogs.berkeley.edu/author/jikeda/ 
• https://ucanr.edu/blogs/blogcore/postdetail.cfm?postnum=28960&sharing=yes
• How Diet Culture Harms Your Health - podcast and interview with Joanne
• https://sizediversityandhealth.org/haes-expert.asp?id=51

PCOS and Hair Loss, Part 1: Prevalence and Diagnosis

September is PCOS Awareness Month. For several years this blog has had an ongoing series about different aspects of PCOS (Polycystic Ovarian Syndrome) and its treatments. Today let's talk about a tough subject: PCOS and hair loss (alopecia).

In our past PCOS series, we have discussed the definition and symptoms of PCOS, how it presents, its testing and diagnosis, and its possible causes. We've also discussed the increased risk for endometrial cancer among those with PCOS.

Now we are discussing common treatment protocols for PCOS, and the pros and cons of each. We've already discussed insulin-sensitizing medications like metformin, the TZDs, and inositol. Then we discussed glucose-lowering medications for those who have developed overt diabetes.

We have also discussed anti-androgenic medications and progesterone supplements for menstrual irregularity. In addition, we did a 3-part series on birth control pills for PCOS.

Now it's time to talk about one of the least-discussed symptoms of PCOS, alopecia (commonly known as hair loss). Today we'll discuss what alopecia is, how it's diagnosed, and what might cause it. In the next post, we'll discuss some of the medical treatments available for it. Finally, we'll discuss some of the cosmetic treatments that women with hair loss may utilize, based on suggestions found on hair loss forums and PCOS boards.

If you have personal experience or expertise in any of these areas, please share in the comments section. Don't let other women walk this path alone; speak up and share your ideas. You are welcome to do so anonymously if you prefer. All comments should be respectful.

Disclaimer: I am not a medical health-care professional. This information is not medical advice about a health condition or treatment. Consult your healthcare provider before making any decisions about your care.

The Undiscussed PCOS Symptom

Irregular periods, sub-fertility, and excess body and facial hair (hirsutism) are the classic symptoms of PCOS, and the ones that get discussed the most on PCOS publications and boards. Acne, weight gain, insulin resistance, and blood sugar issues are other symptoms that get discussed regularly.

However, one of the least-discussed symptoms of PCOS is hair loss (androgenetic alopecia). Even acanthosis nigricans and skin tags get more discussion time on PCOS boards than hair loss.

Sadly, alopecia (and how to deal with it) is not discussed very openly, even among women with PCOS. Sometimes it's simply because the majority of women with PCOS do not experience hair loss, but often it's because of the very strong stigma of hair loss in women. Women simply do not want to admit publicly that they are experiencing hair loss, or they may be in denial about it.

For those who do experience hair loss, it's heartbreaking. Facial hair can be shaved off, but significant hair loss on the scalp is extremely difficult to deal with in a society that judges a woman on her appearance (especially her hair, her so-called "crowning glory"). Shame and embarrassment are common feelings among women with hair loss. "Fixing it" becomes the focus.

Some types of hair loss are fixable, but not all. It's important to acknowledge that up front. Unfortunately, right now there is not a lot that can be done for the type of thinning hair that comes with PCOS except to slow it down. PCOS hair loss is typically caused by the skin being ultra sensitive to androgens. Androgen-blockers can sometimes help, but in most cases, treatment for women with PCOS hair loss only results in slowing down or covering up the hair loss, not reversing it.

However, this does not mean that women with PCOS are without choices. There are many different ways of approaching alopecia, and many ways you can still have a great life despite the PCOS and alopecia. Don't let it stop you or silence your voice.

Types of Alopecia

First, it's important to understand what alopecia is, so let's start with a primer on women's hair loss.

There are many types of alopecia. Some are treatable and some are not, so it's important to know which type you have. Here are a few of the possibilities.

Alopecia Areata

Alopecia Areata (AA) is a patchy type of hair loss, rather than the overall thinning on top of the head seen with the Androgenetic Alopecia of PCOS. It often comes on quickly and results in small circular bald patches. Both men and women can experience it. According to some sources, a person has about a 2% chance of developing AA at some point during their lifetime.

Actor Matt Lucas, wikimedia commons

Some people develop Alopecia Areata Totalis, where all of the scalp hair disappears, leaving the person totally bald on the head. Another subtype is Alopecia Areata Universalis, where all body hair disappears as well as the scalp hair, including eyebrows, eyelashes, leg hair, arm hair, pubic hair ─ everything.

Alopecia Areata is due to an autoimmune condition, and as a result can come and go in severity:

In alopecia areata, immune system cells called white blood cells attack the rapidly growing cells in the hair follicles that make the hair. The affected hair follicles become small and drastically slow down hair production. Fortunately, the stem cells that continually supply the follicle with new cells do not seem to be targeted. So the follicle always has the potential to regrow hair. 

Scientists do not know exactly why the hair follicles undergo these changes, but they suspect that a combination of genes may predispose some people to the disease. In those who are genetically predisposed, some type of trigger–perhaps a virus or something in the person’s environment–brings on the attack against the hair follicles.

The good news for people with AA is that the condition is usually temporary. They have the hope of their hair growing back at some point. For most, the hair returns, but for some, the hair never does come back. Or their hair may come and go unpredictably through their lives, and they never quite know what to expect.

Mild AA can be fairly easy to deal with, from simply styling the hair a different way or applying a little scalp concealer. However, it can be very difficult to deal with severe AA, especially Alopecia Totalis or Universalis. Dealing with the loss of eyebrows and eyelashes as well as complete baldness on top is not easy, especially for women.

On the other hand, some deal with the loss quite effectively with wigs, false eyelashes, eye liner, or tatooed-on eyebrows. There are many resources for products like these here. Some celebrities have had AA and successfully hidden it, like Christopher Reeve and Neve Campbell.

Others choose not to hide their condition, like actor Matt Lucas or athlete Charlie Villanueva. They find trying to hide it a waste of time and energy and live proudly bald.

Here are some links for further information about AA:

• http://www.niams.nih.gov/Health_Info/Alopecia_Areata/default.asp
• http://www.americanhairloss.org/types_of_hair_loss/alopecia_areata.asp
• http://www.baldgirlsdolunch.org/ - also check out their Facebook page
• www.alopeciaareataresearch.com 
• http://www.7billionones.org/nicole
• https://healthresearchfunding.org/famous-people-alopecia/ 
• www.naaf.org - National Alopecia Areata's main website
• https://www.facebook.com/NAAFUSA/posts/208447452569485 - National Alopecia Areata Foundation's Facebook page
• If Your Hair Falls Out, Keep Dancing! How to Cope with Alopecia Areata in a Hair-Obsessed World - by Leslie Ann Butler. Available here
• Boldly Bald Women by Pam Fitros. Available here
• Blonde today, Bald Tomorrow: Living Life with Alopecia - by Stacy Weed. Available here

Telogen Effluvium

Telogen Effluvium (TE) is a temporary form of hair loss and will usually resolve. It usually occurs as the result of a shock, crisis, or drastic hormonal change in the body.

Normally, hair does not continually grow on the scalp. It goes through a growing phase ("anagen") and a resting phase ("telogen"). Normally, about 10-20% of the hair follicles on your head are in a resting phase at any one time. Telogen Effluvium occurs when something causes a higher percentage of follicles to go into telogen phase, making the hair look thinner. Usually this resolves within a few months, but sometimes it takes longer or becomes chronic.

One common cause of TE is from medication which changes hormone levels, such as starting or stopping hormonal birth control like oral contraceptives. TE can also result from hormone replacement therapy, Clomid, or steroid use. Some medications for blood pressure, diabetes, hypothyroidism, anti-depressants, or high cholesterol can also cause temporary hair loss.

Probably the most common cause of TE is post-pregnancy hormone changes. The high estrogen levels of pregnancy can cause thicker and more plentiful hair, but once the estrogen levels drop after childbirth, the extra thickness and hair is lost as most of the hair goes into a "resting" phase, making the hair appear thin. It may take a while for hair to normalize, but most women with post-partum thinning go back to their normal appearance with time.

Some chronic illnesses like Crohn's Disease, IBD (Inflammatory Bowel Disease), hypothyroidism, or liver disease can cause Telogen Effluvium too. A severe shock to the system from things like car accidents, crash diets, severe stress, or serious illnesses can cause it. TE is also common after major surgery in women but may take a while to appear.

Dietary deficiencies are classic causes of TE as well. Common ones include deficiencies in iron, ferritin, biotin, protein, zinc, and certain B vitamins (especially B12), as well as too much vitamin A. Sometimes vegans are prone to hair thinning because over time they may develop a B12 deficiency. Many people who have had gastric bypass or other malabsorptive bariatric surgeries have hair fall out eventually as nutritional deficiencies accumulate over time. Eating disorders can also bring on TE.

Anagen Effluvium

Anagen Effluvium (AE) is a rapid and sudden hair loss from exposure to toxins or treatments for cancer. Chemotherapy is a common source of temporary hair loss for those with cancer because it usually targets all rapidly dividing cells. This means it targets cancer, but hair and mouth cells are also rapidly dividing cells and so are often collateral damage. Radiation treatments to the brain also often cause hair loss.

Although hair usually grows back after chemotherapy and/or radiation, it may grow back differently (changed color, straight instead of curly, change in texture). In some cases, it grows back only partially and never gets back to the fullness it used to have. Sometimes this patchiness can be quite pronounced.

Other Types of Alopecia

There are other, more rare types of alopecia as well, including Scarring Alopecia and Traction Alopecia. These result from trauma to the scalp, usually from tight hairstyles like braids, cornrows, tight ponytails, or hair extensions.

Bald spots can also result from trichotillomania, a compulsive pulling of a person's own hair. Infections can cause similiar hair loss, including fungal infections (like ringworm) and folliculitis. Diseases like lupus, congenital adrenal hyperplasia, or syphilis can also result in hair loss. And of course, age causes a gradual thinning of the hair in many people as hormones shift. About half of women experience some degree of hair loss after menopause.

Androgenetic Alopecia 

FPHL involves more diffuse thinning

Androgenetic Alopecia (also called Androgenic Alopecia, or AGA) is the term for typical female-pattern hair loss (FPHL). It is hair loss caused by genetic predisposition and excess "male" hormones or an extra sensitivity to these hormones (androgens). For this reason, sometimes it is called male-pattern hair loss in women but it does not affect women in quite the same way as it does men.

Typical male vs. female hair pattern loss differences

Women's hair loss is usually characterized by more diffuse thinning all over the top of the head behind the hairline, rather than one particular balding area as in men. Because women's hair loss usually involves gradual thinning, it is less obvious at first than hair loss in  men. However, the thinning gradually spreads so that eventually most of the top of the head experiences thinning, the scalp shows through, and the hair loss becomes more obvious. Although less common, some women also experience diffuse thinning on the sides of the head, along the front or temple-area hairline, and further down the back of the head as well.

Dihydrotestosterone (DHT), a derivative of the male hormone testosterone, is the main culprit behind hair loss in both men and women, as one website explains:

Testosterone converts to DHT with the aid of the enzyme Type II 5-alpha reductase, which is held in a hair follicle's oil glands. Scientists now believe that it's not the amount of circulating testosterone that's the problem but the level of DHT binding to receptors in scalp follicles. DHT shrinks hair follicles, making it impossible for healthy hair to survive. 

The hormonal process of testosterone converting to DHT, which then harms hair follicles, happens in both men and women. Under normal conditions, women have a minute fraction of the level of testosterone that men have, but even a lower level can cause DHT- triggered hair loss in women. And certainly when those levels rise, DHT is even more of a problem. Those levels can rise and still be within what doctors consider "normal" on a blood test, even though they are high enough to cause a problem. The levels may not rise at all and still be a problem if you have the kind of body chemistry that is overly sensitive to even its regular levels of chemicals, including hormones. 

Since hormones operate in the healthiest manner when they are in a delicate balance, the androgens, as male hormones are called, do not need to be raised to trigger a problem. Their counterpart female hormones, when lowered, give an edge to these androgens, such as DHT. Such an imbalance can also cause problems, including hair loss.

Many women with PCOS experience Androgenic Alopecia, although it is a far less common symptom than hirsutism or acne. Put another way, though hair loss rates are higher in women with PCOS than in the general population, most women with PCOS do not experience hair loss.

Why some women with PCOS experience alopecia and others do not is not clear. It probably has to do with each person's unique genetic make-up, hormone levels, and sensitivity to androgen receptors.

Summary

The bottom line is that there can be many causes of hair loss. Just because you have PCOS does not mean you could not possibly develop Alopecia Areata or have hair loss due to an underactive thyroid or a nutrient deficiency. You need to have your case reviewed by a dermatologist so you can get to the bottom of the cause of your hair loss.

Many types of hair loss are treatable and reversible, but some are not. Unfortunately, Androgenetic Alopecia, the type most common with PCOS, does not usually seem to be reversible, but there may be things you can do to slow it down. And of course, there are many practical things you can do to disguise it, if you wish to do so. Or you can simply learn to deal with the hair loss and not let it affect your happiness.

How Common is Hair Loss in PCOS?

One difficult question to answer is the incidence of alopecia in women with PCOS.

There is plenty of research documenting how much of the overall population experiences hair loss at some point in their lives, but most of this research does not differentiate between causes of the hair loss, just that it occurs at some point.

It is very difficult to separate out figures of alopecia in the general female population vs. those that are attributable to PCOS alone. First, let's start by discussing alopecia in the female population by age.

Hair Loss by Age

Most research focuses on the prevalence of hair loss differentiated by age. For example, it is estimated that about one-fourth of men begin balding by age 30, but that this increases to about two-thirds by age 60.

In women, the numbers are more uncertain. One study found that about one-third of all Caucasian women experience female-pattern hair loss (FPHL) at some point; however, a lot of this hair loss occurs after menopause. How much occurs before menopause is less clear.

One study found that about 10% of pre-menopausal women experience significant hair loss, and this number increases to about 50-75% of women over age 65. Another study found hair loss rates of about 12% of women in their 20s, which increased to 57% in women over age 80:

Twelve percent of women first develop clinically detectable FPHL by age 29 years, 25% by age 49 years, 41% by 69 years, and over 50% have some element of FPHL by 79 years. Only 43% of women aged 80 years and above show no evidence of FPHL.

How many of these women might have PCOS? It's not clear. One study of Finnish women found that about one-third experienced noticeable hair loss by age 63, and that this hair loss was often tied to strong insulin resistance. The more severe the degree of hair loss, the more severe the insulin resistance the woman likely had. Thus, it's likely that many of these women had PCOS, but the study did not look into that connection directly.

Alopecia Incidence in Women with PCOS

We do know that alopecia and PCOS are tightly tied together. One study showed that two-thirds of women experiencing hair loss had PCOS.

But this doesn't tell us the opposite; how many women with PCOS experience hair loss as one of their symptoms?

Not a lot of research exists on this question. Most studies do not quantify how many women with PCOS also have alopecia, just that it's a relatively uncommon symptom. However, recently some data has emerged, although the sample sizes in the studies are fairly small so the results vary considerably.

One British study (Sivayoganathan, 2011) found that 16% of women presenting with PCOS-like symptoms had hair loss, whereas 56% had hirsutism.

Another slightly larger study (Quinn 2014) found that 22% of women who met strict criteria for PCOS were experiencing alopecia.

Another study (Ozdemir 2010) found that 34.8% of women with PCOS had alopecia, whereas 73.9% of them had hirsutism. Similarly, Christodoulopoulou 2016 found that 36% of women with PCOS experienced alopecia.

So while most women with PCOS do not experience alopecia, between 16-36% do. In other words, between 1 in 6 and 1 in 3 women with PCOS experience hair loss. Yet even among this group, hair loss is largely ignored or talked about only minimally because of the shame and embarassment.

Interestingly, while hirsutism seems to be fairly closely correlated with androgen levels, alopecia does not. It may be less about how much androgens you produce and more about how sensitive your hair follicles are to androgens. This raises the question of whether anti-androgen medications are really an effective treatment for alopecia. (More on that in another post.)

Diagnosing Alopecia

The Ludwig Scale of Female Pattern Hair Loss (1977)

Again, if you have hair loss, it's important for you to see a dermatologist because there are so many possible causes of alopecia in women and some types are temporary or treatable. A dermatologist can help you determine which type you may have and what can be done about it.

The progression of female-pattern hair loss is usually judged on either the 3-point Ludwig Scale (above), the gradated 3-point Savin Scale (see the bottom of this section), or the 5-point Sinclair Scale (see just below). While there are other scales available, the Ludwig or Sinclair scale seems to be the most commonly used.

Sinclair Scale for hair loss

To diagnose alopecia, a dermatologist will usually do a pull test, a density test, and sometimes a scalp biopsy. Patients should provide a summary of any medications they are currently taking or have taken in the recent past. Doctors should take a detailed medical history of other conditions, including family history of hair loss and autoimmune conditions. A manual examination of the thyroid may also be indicated.

Research strongly suggests that tests for nutritional and endocrine issues also be run, including:

• DHEAs
• Testosterone
• Androstenedione
• Prolactin
• Follicular stimulating hormone
• Leutinizing hormone
• Serum iron
• Serum ferritin
• Total iron binding capacity (TIBC)
• Thyroid stimulating hormone (T3, T4, TSH)
• VDRL (a screening test for syphilis)
• Complete blood count 
• Zinc, Vitamin D

In men, male pattern hair loss usually begins at the crown, then spreads to the temples, and progresses from gradual thinning to total bald spots. The hairline in front often recedes. In the more severe cases, men may be left only with a narrow horseshoe of hair along the back and sides of the head.

Savin Scale of hair loss

In women, the pattern is different. The hair loss begins on the top of the head, and also just behind the front hair line. The first sign is often a widening of the part in the hair, and then the hair on top of the head gradually begins to thin. It can reach down into the temple areas or on the back of the head, just below or around the crown. It is more gradual than men's hair loss, and is usually more diffuse (spread out).

Rarely do women with androgenetic alopecia lose all their hair, have a completely receding front hair line, or have complete bald spots. Instead, the hair becomes progressively thinner and more diffuse, and the scalp shows through more and more, especially in direct light. Eventually, this hair loss can become severe and become near-baldness, especially as women pass menopause.

Women's AGA alopecia tends to become noticeable later than in men, but because they are more conscious of their hair and because the social ramifications of hair loss are more severe, they tend to come in for diagnosis and treatment earlier in the process.

While hair loss is emotionally difficult for both genders, it is especially traumatic for women. Hair loss in men is common and baldness is relatively accepted; in women, it is highly stigmatized, so it is nearly always hidden away and is rarely discussed.

Summary

There are many forms of alopecia and many possible causes for it.

This is why it's important to see a dermatologist in the early stages of alopecia, so you can hopefully find some answers sooner than later. Unfortunately, many doctors are dismissive of these concerns or just put you on strong medications right away instead of trying to determine the root cause of the issue. Women on the PCOS forums stress the importance of seeing more than one doctor if necessary to get answers.

Once a cause is determined, then a course of treatment can be prescribed. Sometimes this is helpful, often it is not, but it may be worth trying just to see. More on these treatment options in the next posts.

Information is power. Make your decisions from an informed place and be aware that there is a lot of quackery and fraud in the hair loss field. People make all kinds of recommendations and claims about treatments, but very little data exists proving whether these treatments actually help.

Be very wary about claims of what can help, even from PCOS resources. Research as much as you can to learn about the benefits and risks of everything you consider trying. Be sure to visit the hair loss forums online so you can gain wisdom and support from those who have already traveled this path before you.

Above all, remember that your looks don't define you. Women with PCOS have many challenges to their self-esteem via hirsutism, acne, weight, and/or alopecia. Dealing with these challenges is frustrating and demoralizing at times, but ultimately these challenges do not define you. Only you can do that.

Remember that who you are inside is the most important thing, and that your confidence and a strong sense of self can overcome society's prejudices. 

Next post: Medications and Treatments for Alopecia


References

J Family Reprod Health. 2016 Dec;10(4):184-190.Clinical and Biochemical Characteristics in PCOS Women With Menstrual Abnormalities. Christodoulopoulou V, Trakakis E, Pergialiotis V, Peppa M, Chrelias C, Kassanos D, Papantoniou N. PMID: 28546817

...MATERIALS AND METHODS: We conducted a prospective observational study of patients 17-35 years of age with PCOS that attended the department of Gynecological Endocrinology of our hospital. RESULTS: A total of 309 women with PCOS participated in the study. In total, 72.2% suffered from menstrual cycle disorders...36% of the sample had androgenetic alopecia and 56.4% had acne....

Fertil Steril. 2014 Apr;101(4):1129-34. doi: 10.1016/j.fertnstert.2014.01.003. Epub 2014 Feb 15. Prevalence of androgenic alopecia in patients with polycystic ovary syndrome and characterization of associated clinical and biochemical features. Quinn M, Shinkai K, Pasch L, Kuzmich L, Cedars M, Huddleston H. PMID: 24534277

OBJECTIVE: To describe the prevalence of androgenic alopecia (AGA) in patients with polycystic ovary syndrome (PCOS) and to characterize associated clinical and biochemical features... SETTING: Multidisciplinary PCOS clinic at a tertiary academic center. PATIENT(S): A total of 254 women with PCOS according to the Rotterdam criteria were systematically examined from 2007 to 2012 by a reproductive endocrinologist, a dermatologist, and a psychologist... RESULT(S): Fifty-six of 254 patients with PCOS (22.0%) had AGA. Subjects with PCOS and AGA were more likely to have acne or hirsutism than those without AGA (96.3% vs. 70.6%)... There were no differences between subjects with and without AGA in biochemical hyperandrogenism or metabolic parameters. CONCLUSION(S): AGA is prevalent in 22% of subjects meeting diagnostic criteria for PCOS. AGA is associated with other manifestations of clinical hyperandrogenism, but not with greater risk of biochemical hyperandrogenemia or metabolic dysfunction than with PCOS alone.

Hum Fertil (Camb). 2011 Dec;14(4):261-5. doi: 10.3109/14647273.2011.632058. Full investigation of patients with polycystic ovary syndrome (PCOS) presenting to four different clinical specialties reveals significant differences and undiagnosed morbidity. Sivayoganathan D, Maruthini D, Glanville JM, Balen AH. PMID: 22088131

OBJECTIVE: This study aimed to compare the spectrum of polycystic ovary syndrome (PCOS) symptoms in patients from four different specialist clinics. DESIGN: A prospective cross-sectional observational study. SETTING: The study was conducted at the infertility, gynaecology, endocrine and dermatology clinics at Leeds General Infirmary, U.K. PATIENTS: Seventy women presenting with features of PCOS: 20 from infertility, 17 from gynaecology, 17 from dermatology and 16 from endocrine clinics.  INTERVENTIONS: Participants were assessed for symptoms and signs of PCOS and underwent a full endocrine and metabolic profile and a pelvic ultrasound scan. RESULTS: All subjects had experienced menstrual problems, 81% were overweight, 86% had polycystic ovaries on ultrasound, 56% had hirsutism, 53% had acne, 23% had acanthosis nigricans, 16% had alopecia and 38% had previously undiagnosed impaired glucose tolerance (IGT) or diabetes....

Acta Obstet Gynecol Scand. 2010;89(2):199-204. doi: 10.3109/00016340903353284. Specific dermatologic features of the polycystic ovary syndrome and its association with biochemical markers of the metabolic syndrome and hyperandrogenism. Ozdemir S, Ozdemir M, Görkemli H, Kiyici A, Bodur S. PMID: 19900078

...DESIGN: Prospective descriptive analysis. SETTING: University-based tertiary care. SAMPLE: One-hundred and fifteen untreated consecutive women diagnosed as having PCOS... RESULTS: The prevalence of acne, hirsutism, seborrhea, androgenetic alopecia and acanthosis nigricans was 53%, 73.9%, 34.8%, 34.8% and 5.2%, respectively. Acne was not associated with the hormonal, metabolic and anthropometric variables. Hirsutism had positive associations with total testosterone, fasting glucose and total cholesterol, and a negative association with age. Seborrhea was found to be related with free testosterone, fasting glucose and insulin. A negative association was determined among androgenic alopecia and free testosterone, low-density lipoprotein and insulin.  CONCLUSIONS: Acne and androgenic alopecia are not good markers for the hyperandrogenism in PCOS. Hirsutism appears to be strongly related with hyperandrogenism and metabolic abnormalities in PCOS women.

The Healing Effect of Health At Every Size College Courses

When I went to college I was truly shocked by the amount of eating-disordered behavior I saw there.

In time I discovered I knew several people with true bulimic issues, some with binge-eating, and some with anorexic tendencies. Many others simply had a lot of neuroses around food and major guilt about "being bad."

What shocked me most was that most of these eating-disordered behaviors were in people who were "normal" weight or just a bit "overweight" by societal standards.

I didn't usually see these behaviors in the fat women I knew, and I didn't see these behaviors in myself. Instead, I saw them in the people that others expected to have healthy eating behaviors compared to me.

What?!?!?!!

That really shocked and surprised me. It made me start to rethink many of the things I had been taught in Weight Watchers and elsewhere. For years, I had believed that all fat people had eating problems (or they wouldn't be fat, right?) and that nearly all average-sized people did not have eating problems. I knew a few had anorexia and I'd heard about binge-eating and bulimia, but I expected most eating disorders to be in people with body size extremes.

Yet really, most of the people I met with eating disorders looked "normal." They were basically of average size, and because of that fact, they were able to hide their eating disorders very well indeed. No one would believe that they had an eating disorder just by looking at them, whereas many believed it of me based on my looks...but it wasn't true.

Now, I have to qualify that a little. After years of dieting, I had started to develop some eating-disordered behavior, but it was pretty mild. It certainly hadn't developed even remotely to the level of binge eating, anorexia, or bulimia. I was never an emotional eater, I didn't binge, nor did I have the kind of neurotic fixation on food that I saw in many of my peers. Once I realized how screwed up some people's behaviors around eating were, I realized that I was better off than I thought. I didn't have an actual eating disorder, and I realized that simply being fat certainly didn't guarantee one. And once I eventually left the dieting lifestyle, any leftover neurotic eating behaviors disappeared altogether.

College campuses are rife with eating-disordered behaviors. The good news is that some colleges are recognizing this, organizing support for those who need it, and offering coursework surrounding these issues. This is a huge step in the right direction.

I hope that college courses like the one below can help blunt some of this angst and help heal people's body issues. College is a powerful time to heal body image and eating disorder issues, so I hope more colleges will make courses like this available.

Wouldn't it be great to see something like this in medical schools too? I certainly have read about a lot of eating-disordered behavior (including compulsive exercise behavior) in medical students over the years. A Health At Every Size® course like this in medical school be incredibly valuable in influencing a more compassionate and healing approach towards body size and eating issues in future care providers.

Colleges and medical schools, are you listening?


Reference

J Nutr Educ Behav. 2015 Mar 10. pii: S1499-4046(15)00011-1. doi: 10.1016/j.jneb.2015.01.008. [Epub ahead of print] Health at Every Size College Course Reduces Dieting Behaviors and Improves Intuitive Eating, Body Esteem, and Anti-Fat Attitudes. Humphrey L1, Clifford D2, Morris MN1. PMID: 25769516

OBJECTIVE: To investigate the effects of a Health at Every Size general education course on intuitive eating, body esteem (BES), cognitive behavioral dieting scores, and anti-fat attitudes of college students. METHODS: Quasi-experimental design with 149 students in intervention (45), comparison (66), or control (46) groups. Analysis of variance and post hoc Tukey adjusted tests were used. RESULTS: Mean scores for total general education course on intuitive eating (P < .001), unconditional permission to eat (P < .001), reliance on hunger (P < .001), cognitive behavioral dieting scores (P < .001), BES appearance (P = .006), BES weight (P < .001), and anti-fat attitudes (P < .001) significantly improved from pre to post in the intervention group compared with control and comparison groups. CONCLUSION AND IMPLICATIONS: Students in the Health at Every Size class improved intuitive eating, body esteem, and anti-fat attitudes and reduced dieting behaviors compared with students in the control and comparison groups.

Lipedema, self acceptance, and trolls

Image from this article

This is a really interesting article by Courtney Mina about dealing with the fat hate that often accompanies being open about lipedema or being body-positive in any way online.

She posted some pictures of herself in only undergarments on Instagram, Twitter (#biglegs), and Facebook to see if people would continue to be body-positive towards someone with large legs. She was open with people about having lipedema, what that meant, and how it has affected her life, all while still being body-positive.

Gratifyingly, many people were body-positive and supportive of her. This shows that body-positivity campaigns are making a difference and the message is being heard. 

However, there were also haters. Some of it was the open, in-your-face really vicious hate so common on the internet (yep, I get it too). Ugh. But that's such an obviously biased and obnoxious response that you mostly just have to let that roll off of you. Some people are just trying to stir up trouble and some people are just outright misogynists. None of us should be subject to such hatefulness, it's wrong wrong wrong for sexism like this to be so prevalent and our society needs to target this misogyny, but some individuals are so hateful they are simply lost causes. I refuse to lose sleep over them.

Of course there was also the poisonous "concern trolling" ─ I'm-just-worried-about-your-health stuff. This is the kind of stuff fat people get bombarded with by people we care about (because obviously you are simply in denial if you are fat and not trying to lose weight). They can't see how much they've bought into harmful untruths about weight and health, and they find it difficult to acknowledge that there really are medical conditions that can cause fatness. They think that since their bodies work a certain way, all bodies must therefore work that way, even when evidence for a disease process is presented to them. They mean well, but it's still hurtful.

And of course, sometimes the worst people of all are the "plus-size police," the women of size who so hate their own bodies that they try to police other fat women's bodies too. The self-hate they have is just palpable and so sad. The absolute worst are the ones who are in the honeymoon period during or just after weight loss before the regain begins, or the ones who are chronic dieters. They are in the "high" phase of the dieting addiction and they want everyone to join them on this drug. No one is allowed to rain on their parade, gainsay their experience, or present an alternative approach like Health At Every Size®. Anyone who approaches it differently is just "in denial."

Sadly, even some in the fat-acceptance movement have wanted to deny the medical reality of lipedema, a medical condition that often leads to heavier-than-average legs, hips, and arms. It's as if they think that any acknowledgement of a possible biological condition underlying weight means we are making excuses for it to appease the haters, rather than embracing our size with acceptance. [Nope, you can acknowledge the biological causes and still be part of fat acceptance.]

I thought this post had many thought-provoking things to say. Definitely check it out. I was encouraged that many people were supportive of her, but I have to wonder how many were supportive because she is young and beautiful. There's a heck of a lot less supportiveness out there for middle-aged and older fat women, but I have hopes that this, too, will improve with time. Body positivity should not be only for the young and beautiful but for people of all ages and looks.

http://www.bustle.com/articles/102550-i-have-lipedema-posted-a-photo-of-my-big-legs-on-instagram-to-see-if

Your Body Is Not A Lemon

Image from BodyLoveWellness.com

Sadly, in our society, pregnancy is often used as a time to make women feel neurotic or guilty about their bodies.

However, pregnancy is an incredible opportunity for body love and body image healing.  It offers a tremendous chance to do many years' worth of healing, compressed into a short amount of time.

Instead of hating on your body, try embracing your body instead. Marvel that the miracle of growing a new baby can occur in a lush body as well as a sparse one.  Give yourself credit for all the things your body is doing right.  Embrace the changes that pregnancy and birth bring to your body, for they are the Tiger Stripe Emblems of Honor that mark your experiences as a mother.

Remember this, for it is as true as true gets: Your body is not a lemon.  

You are not a machine. The Creator is not a careless mechanic. Human female bodies have the same potential to give birth well as aardvarks, lions, rhinoceri, elephants, moose and water buffalo.  

Even if it has not been your habit throughout your life so far, I recommend that you learn to think positively about your body.

~Ina May Gaskin, midwife and author of Ina May's Guide to Childbirth

Belly Blog Carnival!

The beauty of my body isn't measured by the size of the clothes it can fit into, but by the stories it tells. I have a belly and hips that say, 'we grew a child in here' and breasts that say, 'we nourished life.'

- Sarah from I Am Beautiful: A Story of Women in Their Own Words

In January and February, I wrote two posts called Belly Thoughts and Further Belly Thoughts.  They were about belly ambivalance, specifically about how my generally good body acceptance was challenged by pregnancy and birth, and how I sometimes still struggle with that.

However, even as I explored topics of body ambivalence, I tried to end on a positive note with an acknowledgement and honoring of the work our pregnant bellies had done.  I wrote about honoring my belly, I posted some pictures of how my older children painted my belly in the last weeks of my last pregnancy, and I discussed how much those pictures meant to me.

That was my way of trying to bring the conversation back to a positive place, because even as I am challenged to fully love the changes in my body brought about by age and multiple pregnancies, I also do not regret having had children, not for a single moment.  My children are more than just compensation for the changes that have happened to my body.

As I've written before, I think it's a crime that there are not more images of women of size pregnant, birthing, breastfeeding, and parenting.  I certainly could have used some images like that when I was first pregnant and afterwards, and I know many other women of size feel the same.

Most of the information out there on fatness and pregnancy is very negative, and rarely do you see any pictures at all in the media ─ let alone beautiful pictures ─ of women of size in pregnancy and afterwards.  And we need images like those. 

And many of us, trained to be self-conscious or ashamed about our size, neglect to document our own pregnancies in any significant detail, whether that be with belly pictures, birth pictures, breastfeeding pictures, or parenting pictures.  Far too often we take the pictures, instead of letting ourselves be the subject of pictures, and that just adds to the lack of documentation out there....and the lack of documentation of our own lives.

And we need documentation.  We need to STOP being invisible mothers.  We need ─ and deserve ─ to be seen.  We deserve to take up space in the world as women and as mothers.

A number of you have sent me pictures of yourselves pregnant as a result of my post about the lack of images, and I think this is awesome.  Thank you to everyone who has sent in or shared their pictures with me.  I have so enjoyed them.

However, I've been a little reticent to use some of them on the blog because of the fear that a troll might take these pictures and abuse them.  Unless you have made it really clear to me that you are okay with your pictures being online forever like this, I usually haven't used them, just to be cautious.

But even as I worry about these things, I've decided it's really important that we declare our independence and post our pictures anyhow.  It's SO important that there be pregnancy and parenting images of women of size out there, showing that we do have babies, we do give birth, we do breastfeed, and we do parent.

We women of size are women, just like other women, and we have families, just like other women.  It's about time we got more documentation of that.  And it's about time we celebrated that more, instead of hiding whenever the cameras come out.  It's time we became visible moms.

So as a positive coda to my series on belly thoughts, I would like to propose a BELLY BLOG CARNIVAL. 

If you have had children, blog about your pregnancy belly and body, and post pictures too.  Document your experience in words and/or in pictures, and share your feelings ─ positive,  negative, challenges and all. 

If needed, please use trigger warnings out of respect for others, but I would ask that everyone try to end with a focus on the positive, if at all possible.  We can document our challenges, but let's also not forget to celebrate our bodies.  I especially welcome entries which celebrate their bodies in creative ways.

When you have posted your entry, send me a link to it (with a brief summary of what it's about). You can send it to kmom  [AT]  plus-size-pregnancy [DOT]  org.  Send it by March 31st, 2011.  Then I'll summarize everyone's posts together (with links) in one place here on my blog sometime in April.

If you don't have a blog and just want to share a picture, you can email that to me as well, along with permission to use the picture and whatever brief information  you want to appear with it. I generally discourage the use of real names, since this will be available online forever, but if you are absolutely positive you want this picture of you, identified with your name, available forever (the logistics are too much if you change your mind and want to delete it later), I will publish that as needed. Depending on how many I receive, I may put it in one big post, spread them out over a number of posts, or open a Tumblr account or something (if I can figure out how...I'm new to that!). 

(If you send me a picture, please remember to give me explicit permission to use your picture or I won't post it.  People often send me a picture but forget to add permission, and I don't have time to do follow-ups to get that.  In addition, if you'd like to include permission for me, kmom, to use your picture in whatever way I need for future posts, articles, presentations, publications, etc., I'd love to have that as well.  I'm always interested in adding to my gallery of plus-sized pregnancy and parenting photos to use as needed in my various projects. I welcome pictures from everyone but am particularly in need of pictures of any stage of pregnancy or parenting from women of color, and pictures from women of size during labor and birth.)

In summary, it's time to cap this belly discussion with a positive finale.  Over the next few months, expect to see periodic pregnant belly pictures on my blog from various women of size. We may even have related posts about belly casts, belly henna, belly painting, and other things we as women of size can do to celebrate our beautiful lush pregnant bodies. 

Bring on the bellies!!

*And isn't that picture from "Lyista" at the top of this post just the MOST gorgeous belly photo ever?  My thanks to her for sharing and for giving me permission to use the photo!

Further Belly Thoughts

About a month ago, I published a post called Belly Thoughts that was quite controversial to some people. 

I've been writing a follow-up for a while, but I've been working on a big project at work and have had sick/injured kids, so I have had a hard time finishing it. I have also been struggling to clarify my dismay and surprise over people's response to that post. Honestly, the response upset me and I thought it best to wait a bit before replying so I could make a more measured response.

But I think it's time now to continue the discussion.  Forgive me if it's a bit rambly.  It's just time to get it out there, imperfect as it is, so we can discuss it and then move on.

Trigger Warning: Frank discussion of body image issues and body ambivalence will follow.

First, thank you to those who commented, even if I didn't agree with you or like what you said.  Dialogue is important and it's not always a bad thing to hear dissenting voices.  It generates discussion and can clarify issues or further the conversation. Obviously, this topic provokes some strong feelings, and I think that's an important point to explore. 

One complaint that was made was that the post needed a Trigger Warning.  With some reflection, I can see that point. I thought about putting one in the original post, but I thought it was not needed because I felt I was pretty clear in the intro paragraphs what was going to be in the post.  However, I can appreciate that some people in their journey need a really clear and obvious warning about these things. So that point is noted and I have already gone back and added a trigger warning to the original post and to this one as well.  My apologies to anyone who I inadvertently triggered.

Some folks objected to the Shamu word. That may have been a bad choice, but I was actually being ironic, and I think folks missed that. I see people on the feed mockingly use words commonly used to deride us (like "deathfat" etc.), so that's where I was going with Shamu, but the ironic intent may not have been clear enough. I was trying to point out the tremendous irony of worrying about what I'd look like at 9 months pregnant and then not looking pregnant at all. By using the term Shamu, I thought it made for a better, more pointed bit of irony. But alas, I think the term is so emotionally loaded for some that they didn't see an ironic use of it. I'm sorry it caused bad feelings for some.

One thing I think it's important to clarify is that what I was talking about was body ambivalence, not body loathing.  No, I don't always have perfectly happy loving feelings towards every part of my body 24/7 (who does?), but sharing that does not mean that I hate my body or am engaged in fat-based self-loathing. It only means that I have mixed feelings towards parts of my body sometimes.  It doesn't mean that I don't have good feelings towards my fat body at times, or that I've been hiding secret loathing behind a facade of fat acceptance.  It's just body ambivalence, not body hatred.

Perhaps I wasn't clear enough in the post that most of the time, I'm pretty at peace with my body ─ a lot more than a lot of the thinner women I see around me, in fact.  But not 24/7/365, and some parts are more challenging to love than others, you know?  I was just trying to be up front about that, because I think we NEED more of this kind of honesty, especially among mothers, and especially among mothers of size.  But it wasn't about hating myself, just my struggle to love the changes that pregnancy has wrought.

Before pregnancy, my most difficult part to love was my chest, because I'm very well-endowed and that has all kinds of physical and emotional burdens attached.  After pregnancy, once breastfeeding worked out, that actually was the part that experienced the most positive self-image improvement.  The part of me that had previously only been a burden before suddenly was responsible for nourishing and protecting my babies for  months ─ years ─ on end, and my babies certainly loved that part of me, so why couldn't I?  I just had a totally different take on my breasts after that, even as I still sometimes struggle with loving them fully.

My belly was a different matter, much to my surprise.  Before pregnancy, I was pretty much fine with my belly.  But I was really surprised how much challenge I had with it during and after my pregnancies ─ especially after multiple pregnancies.  It does take a toll on your body shape and your body image, and I was just trying to articulate how that challenged me in my fat-acceptance and body-acceptance process.

So folks, if you were worried about me loathing my body or that I was suddenly revealing secret reservoirs of self-hate, please be reassured that most of the time, I'm pretty self-accepting.  But I don't think it's a problem to share that I'm not always that way, or that certain things really challenge my body image more than others.  I think a combination of pregnancy and recent aging-related changes of perimenopause gave rise to more reflection than usual on that, that's all. 

One thing I was very much troubled by was the fact that some folks questioned whether my posts belonged on the Fatosphere.  That in particular really shocked me, considering all the work I've done in Fat-Acceptance over the years.  Heck, I've been in the Fat-Acceptance movement for longer than some of my readers have been alive.  I'm not just talking the talk, but have been actually walking the walk for many years, and have been writing, researching, publishing, and presenting at conferences on the topic of fatness and pregnancy for more than a decade.  I've been a quite vocal and active FA-advocate, and have been a member of NAAFA for years.  To be questioned in my own backyard about my "FA-ness" was quite distressing.

Let me be clear.  I don't see my post as contrary to the purpose of the feed at all, or to Fat Acceptance in general. The Fatosphere is SUPPOSED to be a place where we can work through a lot of our feelings, good and bad, about our bodies. In my view, it's not a "you can only express positive things about your body no matter what" place.

Certainly, I surely see a lot of body ambivalence on other blogs. Why would my blog be exempt from being able to talk about that? The fatosphere is supposed to be the one place where we CAN talk about these things without being judged. And yet, there I was, being judged for some pretty normal feelings, ones extremely common to mothers after pregnancy, and I wanted to talk about how that interacted with my self-acceptance beliefs. I see that as very much in concordance with what the Fatosphere is supposed to be about.

I'm also very frustrated with the idea that I can't express ambivalence about the droopy baby belly, the "flap" if you will. Nearly all mothers have some ambivalence about this ─ it's very normal in women of all sizes, and I think it's intensified for many women of size. Why is this okay for women of average size to talk about ─ but not for us as women of size?  We all have to process it; it's a very normal feeling.  Some people experience the belly flap more than others, but we all have to process body changes to some degree.

It's not like because we are fat-accepting, we have a magic shield against negative feelings from body changes.  We have these issues too, and it may be intensified in those with previous body image issues.  Even those of us who are pretty far along on the fat-acceptance spectrum can still feel challenged by these things ─ and that's okay. And it doesn't mean that we are now body-haters and full of self-loathing and about to sign up for surgery.  It means we're processing normal feelings.

My whole point is that the changes in my body (and specifically my belly) resulting from several pregnancies, lipedema, and age are challenging my fat- and self-acceptance in a way it's not been challenged in a long time, and I continue to struggle with that. I think being honest about these kinds of struggles is absolutely VITAL to the fat-acceptance discussion. What are we here for if we can't discuss that kind of thing?

I'm not telling others how THEY should feel about their bellies. If you came through pregnancy perfectly positive about your belly, more power to you. I'm simply trying to express that even in me, a VERY self-accepting and fat-accepting person, dealing with this pregnancy after-effect has been quite challenging, even years after my last pregnancy, and how surprising this has been to me as an activist.

I certainly think that postpartum feelings about your body (and the unique challenges that might bring to fat women) is an appropriate topic for my blog, don't you? I KNOW a lot of other women of size have struggled with the same feelings because they've written me about it. I was articulating my own struggles as a way to not only help me with my own ambivalence, but to help others explore their own.

It was such a shock to me, how pregnancy challenged my fat-acceptance in so many ways. For example, as I've written about before, I went from a take-no-guff-from-doctors FA person to a meek little sheeple who got railroaded and frightened into a whole bunch of unneeded and fat-phobic interventions in my first pregnancy. It took me quite a while to get past that, but working through that and empowering myself enough to question the doctors led me to create my website and my blog. The journey was worth it ─ but it didn't happen overnight, and it took a lot of emotional processing to get there.  Sharing that is helpful to other fat women struggling to figure out what interventions are needed in their pregnancies and which ones are questionable,  what choices they really have in birth, and cutting through the anti-fat rhetoric that surrounds so much of the information out there on pregnancy and fatness.

I think a similar journey is worth it on the whole belly ambivalence question too. Pregnancy (and especially post-partum) totally challenged my FA-ness, and I still work through it. I don't think talking about that is in opposition to the fatosphere at all. I think it will help other women on their journey, which is why I talked about it in the first place. People are at all different points on their journey to fat acceptance, and I think it's extremely helpful to see someone else struggle with that journey too. To have my FA credentials questioned because of that is extremely frustrating to me.

Another thing that frustrated me was that while I discussed my belly ambivalence very frankly, I also made a real point of bringing the question back to positiveness at the end of my post. I made a point of honoring our bellies anyhow, even in the face of ambivalence, and acknowledging the incredible work they did. I thought I made that point pretty strongly, using my words and my belly-painting pictures, because it's very much how I feel. So it's upsetting to me to have that conclusion ignored or negated. Yes, I talked frankly about belly ambivalence and the challenges I've experienced, but then I brought the discussion back to a positive conclusion. That's an important point that got ignored by some.

Furthermore, it makes me frustrated to feel censored in what I'm "allowed" to talk about as a "good" fattie. Ambivalent feelings are part and parcel of the journey to FA, even for people well along on that journey. Other people can talk about this on the feed (and do), but for some reason it created a lot of reaction when I did it. Perhaps it's harder to hear it in relationship to pregnancy (society really tends to discourage expressing negative or ambivalent feelings about pregnancy).  Or perhaps it's hard to hear someone who doesn't usually express much body-ambivalence actually express some.

But the whole point was that this is a NORMAL and VERY COMMON response to pregnancy and post-partum body image in women of all sizes, and that it's often intensified for women of size and we should be discussing that.

Expressing that doesn't make someone anti-FA. It just acknowledges a common feeling among many women of size, something many of the women in the comments commiserated with, you'll note.

The fall-out from all this is that right now, I don't feel safe choosing topics for the blog, and that alarms me. I was planning a big series addressing the risks of pregnancy in women of size, because the fat-phobic doctors contend that a pollyanna approach ("everything will be fine") to fatness and pregnancy is misleading and intellectually dishonest. Research is clear that there are more risks for certain complications in women of size in pregnancy ─ the problem is that doctors DISTORT that information and use it as a scare tactic or a way to pressure women into questionable interventions. I want my series to look at the research dispassionately, acknowledge what risks there are, make sure people understand these potential risks, discuss how we can be proactive to lessen those risks, and make sure people understand that, though there, these risks are still generally small ─ that most fat women will have healthy babies just fine.

But now I'm questioning whether I should even attempt such a series, whether this will be seen as too negative or not "FA enough" for some. Yet I think not doing that series would be a tremendous disservice to women of size.  The whole purpose of my website and my blog is honest and accurate information, not just rah-rah cheerleading and a polyanna approach.

Women of size NEED intellectually honest discussions about the research, good and bad, along with primers for understanding it and using it to help improve our outcomes and experiences.  We don't need more "everything will be just fine" or "oh my God you're going to die" extremism.  We need a more nuanced approach.

I just am frustrated with the idea that we should only be fat cheerleaders and never be allowed to go beyond that.  Fat Acceptance is a journey, and I think it's important that we be allowed to fully process our feelings, even the ambivalent ones, along the way, without people jumping to conclusions about our FA-ness. 

Okay, so now I've vented a bit and expressed my concerns too.  Feel free to discuss in the comments section.  Just please be respectful and polite, even if you disagree and need to argue a point, okay?  I'm feeling particularly tender and touchy on this subject right now and would appreciate some delicacy, even as I know that dialogue is important.

But I don't think the discussion ends here.  This is of necessity a rather negative post, and I'm okay with that up to a point.  I think the frustrations needed to be aired and perhaps some good will come of the dialogue.

However, I prefer to bring the discussion back to the positive whenever possible.  So I decided to put the negative things in this post and do a whole different post next time that focuses things a little differently, a little more positively without being false, that puts things back on a more constructive footing. 

I'd like to propose a Belly Blog Carnival next time ─ more on that soon!!

Belly Thoughts

So, for those of you who have been pregnant, how did you feel about your pregnant belly?  How did you feel during pregnancy?  After pregnancy, with the post-mummy tummy?  Years later?

I was reflecting the other day on my relationship to my belly, especially in regards to my pregnancies and births ─ how I've celebrated it in some ways, and how I've struggled with it in other ways. 

I thought about things that I expected to happen and how the reality did or didn't meet those expectations, things that surprised me, things that pleased me, and things that made me unhappy or which challenged my peace with my body. 

Thought I'd share some of those thoughts here.  Hope you will share your own experiences too.

Trigger Warning:  Frank talk about body ambivalence and negativity. Some folks may find this post challenging or triggering and may want to opt out.


Worrying About Shamu

My first pregnancy was a surprise.  I went from being told I would not be able to get pregnant without "help" to being pregnant a few months later without trying.  So I was totally not prepared to think about pregnancy bellies! 

I hate to say it now because it sounds so vain, but I was really worried about what I'd look like pregnant.  I was already a large person; I figured when I was pregnant I'd look like Shamu. 

Now, I don't mean that in a negative way; I was pretty at peace with my body pre-pregnancy, and I didn't really "fear" being huge in pregnancy.  But I was having a hard time picturing the giant basketball belly you see on skinny women added to my already sizable frame, you know?  And I wondered what I'd be wearing on that basketball belly (or if I could find anything to wear at all, considering that it wasn't easy to find clothes even when not pregnant).

I know a lot of other women of size wonder these things too, because the top post viewed on this blog (by a HUGE margin) is the one on plus-sized pregnancy photos.  There are so few pictures of women of size out in the media, let alone pregnant women of size.  (And fat pregnant women of color?  Nearly impossible to find. Gah!)

The most common search words people use when they find my blog has to do with this search for images of fat pregnant women.  Except the phrases are usually "overweight and pregnant photos" or "obese pregnant belly" or "obese pregnancy pictures" or "plus-size pregnancy belly pics" and things like that.  There is a tremendous desire for pictures of pregnant women of size because I think so many fat women have that "Oh-My-God-What-Am-I-Going-To-LOOK-Like" anxiety. 

The Shamu obsession, I call it.

The Not-Looking-Pregnant-Surprise

The ironic gotcha to all that worry is that once I was well into pregnancy, I was disappointed to realize that I didn't look pregnant at all. 

People kept looking at me and wondering where the pregnancy belly was, I could see it in their eyes.  Well, it was there ─ it just wasn't visible to the casual onlooker.  I have a big ole rack-o-doom and that tends to hide any belly popping out pretty well, plus my baby was facing my belly (occiput posterior) for much of the pregnancy, which means you "show" a lot less (cause the baby's behind is facing the other way!). 

I was so NOT showing in pregnancy that most people couldn't even tell I was pregnant until the baby was nearly born.  My classic story of this was when I had to move during my 8th month of pregnancy.  I showed up to my new doctor's office, told them I was transferring care there from another state ─ and they eyed me and asked me if I needed a pregnancy test!  I said, uh no, I'm 8 months pregnant already and if you need confirmation, you can come over here and feel her kicking!  They still looked dubious but took my word for it. I was so upset that they couldn't tell I was pregnant even at that point.

The only time anyone knew I was pregnant was just before I gave birth at 40 weeks.  I was in an elevator, going up to my last OB appointment, and a doctor on the elevator remarked on my pregnancy (he didn't know me; he was just being kind and making small talk).  I could have kissed him!!  Finally, FINALLY, someone saw I was pregnant.

So in the beginning, I was most worried about just how large I might get in pregnancy, only to have the ironic problem of no one even knowing I was pregnant most of the time.  Some fat women do look obviously pregnant, but some don't.  A lot depends on factors like the position of the baby, your shape ("pears" show more than "apples" or "hourglasses"), and your overall frame. 

If you are bothered by folks not knowing you are pregnant, the secret is to wear obvious maternity clothing, stand with your hand massaging your belly a lot, and talk a lot about your pregnancy.  That will make it clear to all but the most oblivious by-stander that it's not just fat but actual baby in there too.  (Sad we have to be so OBVIOUS about it, but hey, if it brings you peace of mind, go for it.)

The Hard-Belly-Surprise

The biggest thing that surprised me about my actual pregnant belly was that it was hard. 

I was used to my belly being a bit more on the soft and squishy side ─ not flabby but not rock-hard either.  But in pregnancy, my "bump" was quite hard and that really surprised me.

The not-so-lovely part of this was that the squishy parts then drooped down to the underside of the baby bump and I developed an "overhang" that I'd never had before.  Eywww.

Now, I'm generally a lot more self-accepting than most but even I had trouble being loving and accepting of the big belly droop that sent all my fat south for the winter.  Permanently. 

That was a not-so-pleasant surprise.

And it only got worse with each kid. 

Four of 'em.

The Postpartum-Belly Reality

I have to be frank about this ─ this belly droop thing has been hard to deal with.  Honestly, it's not a part of my body that I'm so at peace with anymore. 

Hard as it may be for some people to believe, I really was okay with my belly before babies.  It wasn't flat, it did have a bit of a roll, but nothing all that remarkable. I carried more of my weight in my boobs, hips, and legs.  I was okay with my belly.  I wasn't photographing it and sending it off to magazines, but I really didn't hate it and I really did enjoy the fact that my waist was so much smaller than my hips, giving me that va-va-va-voom hourglass vibe. 

But post-children ─ oy.  The va-va-va-voom factor?  It va-va-va-vrooomed off to another universe.  The belly droops down now in a way it never did before.  If I move in just the "right" way, I can hear the "slap-slap-slap" sound of my flesh hitting against itself.  It never did that before children!  Oh my gosh, I cannot tell you how much I absolutely loathe that.

And that hourglass figure?  Well, it's not a straight line but it's closer.  I gained a lot of abdominal fat in my pregnancies, and I dislike that for a number of reasons, both aesthetic and more importantly, because abdominal visceral fat is much more of a health risk.  I used to be very much a pear, or at least an hour-glassy pear with boobs.  Now I gained an apple to add to the pear with boobs, leaving me just fat all over.  That didn't make me very happy. I don't mind being fat, but I really liked actually having a shape.  Now, I feel more like a blob.

The extra abdominal fat certainly wasn't from gaining "too much" weight.  I gained a total of 5 lbs. net (lost 10 or so and then regained 15) on average with each child.  I bounced around a bit between each but ended up at about the same weight I started my first pregnancy.  However, you'd never know it from looking at me.  I look quite a bit heavier now than I did before my pregnancies.  And that sucks, I have to say.

It sucks not because I'm fat but because I look a lot fatter than I really am.  I basically am the same weight as 16+ years ago....but I sure look a lot heavier.  I'm not thrilled with that ─ but the real reason it sucks is because I know from the research that abdominal fat really is more risky. Even though I didn't gain "too much" and even though my eating habits actually improved from pre-pregnancy....I look more at risk, and probably am more at risk.  Damn.

The Lipedema Effect

As a side note of interest, I should point out that the bellyfat gain is probably due to lipedema (warning: not a fat-acceptance link).

People with lipedema (not the same as lymphedema) have a tendency to gain abnormal fat deposits in the lower body, especially the legs, but sometimes also in the abdomen or upper arms. They often gain a lot of these fat reserves during times of major hormonal changes, like puberty, pregnancy, menopause, etc.

My legs look just like the picture here, my legs got bigger symmetrically, I have the classic "cankles" with the ring overlap at the bottom yet my feet are not affected, and it is extremely painful to have any pressure on my legs, especially my lower legs.

While the lipedema fat gain did happen a bit, it was not too bad with the first few pregnancies. However, in the fourth pregnancy (in my 40s), the combination of pregnancy plus perimenopause plus postpartum thyroiditis did seem to add an awful lot of fat, both around my ankles and in the abdominal area.

So while I'm technically at the same weight I started my pregnancies out with, my fat levels have definitely increased, and that's been difficult to be at peace with.

Now, the belly droop thing is pretty common among women of size after pregnancy.  Fat women often experience this, regardless of how much weight they gained, how they gave birth, etc.  (Some get it without pregnancy too, especially if they've had a lot of drastic weight loss/regain in their lives.) 

But mine may be worse because of my 2 cesareans, because many women (fat or skinny) who have had cesareans find they have a post-cesarean "shelf" or "flap."  I'm sure some would be there anyhow without cesareans, but most cesarean moms really do see a marked increase on the belly flap-o-meter, and I'm sure being fat and having lipedema and having had cesareans only magnified that lovely effect.  [Another *#ing gift from my cesareans!]

So all in all, I've had some real challenges to my body acceptance after four children.

Belly Ambivalence

I take some comfort in knowing I'm not alone in my belly ambivalence, though.  A lot of women have droopy bellies postpartum, a ton of stretch marks, and a different overall shape than before. 

A change that drastic ─ well, it's just not that easy to come to terms with, no matter how much you love your body in general, or how much you adore your babies and wouldn't trade them for the world. So having a hard time coming to peace with your body afterwards is very normal, as you can see here:

http://www.theshapeofamother.com/

Beware, though, this is not a body-acceptance or fat-acceptance site at all.  These women have all the self-hate of their bodies (and especially their fat bodies) that is so typical of women in our society.  Add in the wrinkly, saggy belly that is universal immediately postpartum, and the body hate talk there can be really strong at times.  So while the pictures at Shape of a Mother are great to see, you should know that the self-hate talk may be triggering for some. 

Personally, I still find the site useful, even though I find the self-loathing and pro-dieting talk frustrating. I try to remember that it does reflect the ambivalent feelings many women have about their bodies post-partum ─ magnifying whatever body image issues they already had pre-pregnancy ten-fold.  Plus I just don't know any other sites out there that have such honest pictures of postpartum bodies. So I value the absolute honestly of the pictures themselves enough to try and overlook the self-hate talk.

Here is the link to the category of pictures of pregnancy and post-pregnancy bellies in women of size:

http://theshapeofamother.com/category/plus-sized/

[Again, be warned that there's lots of diet talk and WLS (weight loss surgery) discussion there.]

Belly Honor

No, it's not easy to stay at peace with your body (and especially your belly) during pregnancy and post-partum.  There are many challenges to body image, and the natural changes that come with pregnancy can exacerbate the body image issues of even the most self-accepting woman.

Still, it's important to honor the vital work that our bodies did, to love every bump and curve for the job it did bringing a new soul to the earth, growing a healthy being and helping it into this world, and nurturing that new life afterwards.

I guess my main message on this is that it's normal and okay to be a bit ambivalent about your body shape and condition after birth (even long after birth).  Don't hate on it, recognize the important work it did ─ but realize that it's totally normal to have some ambivalence about it too.

Acknowledge that, and then take some time to honor your belly anyway. 

To honor my belly despite my ambivalence, here are some shots of me several years ago in my last pregnancy.  I was "overdue" and impatient to have the baby, but I'd been down the Seduction to Induction Road before, knew how often it leads to a cesarean, and refused to get lured into that trap again.  So I was waiting....and waiting....and waiting...and waiting.  Baby didn't come until nearly 43 weeks by LMP (nearly 42 by adjusted dates).  Augh!

So to distract myself and to have some fun in those last few days, I put on my oldest, ugliest painting clothes, gave my kids a bunch of washable tempera paint, went out into the back yard, stuck out my belly, and gave them a new and unique painting canvas. 

They were young; the resulting artwork is probably not beautiful to anyone in the world except me, but we had a BLAST.   

I remember that belly-painting session with tremendous fondness.  I hope they do too. 

So I honor my belly, stretched out and saggy and droopy as it was (and still is), for all the work it did bringing my wonderful babies to me, like this one, below. [Yes, she is the one in-utero above.]

It was totally worth it, every bit of it.  

Enjoy. And find a way to honor your bellies, too.

*Art Docent Hints: If you enjoy a good mystery and want to try and deciper the painting, look for the picture of the baby they drew.  Look for the green head with a brownish arm sticking out to the side underneath (the rest of the body is a bit amorphous, I'm afraid). Also look for the word "baby" on the side.  There was an arrow below it, pointing to the baby, but it got obliterated by an overenthusiastic toddler.  Then they filled in the blank spaces with random colors and swirls. The final result was a bit Picasso-ish, but hey. 

**Fetal Position Postscript: For the curious, yes, in this picture my baby bump is really quite visible, but then my baby in this pregnancy was in the most optimal position for birth, which is anterior.  That means the little butt was sticking out in front, making a nice big bump to paint on.  In my first pregnancy, when I didn't look pregnant at all, baby was posterior and in that position the baby butt doesn't stick out and make much of a discernible bump.  The difference? I saw a pregnancy-trained chiropractor and got some adjustments.  That made my last pregnancy SO much more comfortable, and it helped baby to be anterior after 3 prior pregnancies with a posterior baby!  Trust me, that's a MUCH easier labor!