Susan comes from a family with three generations of breast cancer survivors, and went through a double mastectomy because she carries the cancer gene. A victim of a disease called “Alopecia Universalis,” she lost all her hair years ago, and has experienced first-hand the difficulty of dealing with the “stares and hurtful comments” she received.

“After my initial period of adjustment,” she says, “I began to explore the options for women who experience medical hair loss.” Susan went on to design the unique “BeauBeau” scarf and establish her own business. 4women.com now helps women and young girls to cope with the emotional upheaval of medical hair loss by providing appearance solutions and by advocating for greater awareness of the issue.

Just how much can losing her hair affect a woman’s outlook? Studies have shown that feelings range from depression to embarrassment to a complete loss of self, with some of these effects lasting even after the hair grows back. I know that personally, my hair is part of who I am, and that it helps me feel confident and feminine. When I lost my hair during cancer treatments, it was extremely difficult for me, and to this day I baby it and care for it to be sure it sticks around!

Susan’s research appeared in the Clinical Journal of Oncology Nursing (Volume 15, Number 3), which details the difficulties facing patients who have to cope with hair loss. More specifically, the article talks about the fear surrounding upcoming hair loss, and how that can be even worse than the actual hair loss itself. Learning coping techniques before the changes occur in one’s appearance—called “anticipatory coping”—can go a long way in helping a woman to take control of her life and her survival.

“Anticipatory coping,” the authors state, “defined as the process of anticipation and preparation for an altered appearance…may play a key role in helping women to not just cope, but to rise above the assault to their self-image and self-esteem posed by sudden hair loss.”

The article goes on to detail the results of Susan’s online survey of over 1,300 women who were cancer survivors, were currently going through cancer treatments, or who had just been diagnosed. Susan wanted to find out how these women coped, and what they found to be helpful. Over three hundred women responded, and what they revealed was that having a sense of control over their changing appearance was extremely important.

“We survive by not just feeling in control, but by actually being in control,” one respondent wrote. “There are many choices out there, every woman needs access to and to know all their choices so they can choose for themselves.”

“During this period of uncertainty and fear, being able to grasp even the smallest sense of control is very empowering,” another added.

Susan also discovered that many cancer survivors were not getting the support they needed from their nurses, doctors, or cancer centers. “My surgeon knew no resources and yelled at me for bothering him…” one respondent wrote. Others said their healthcare professionals did help provide additional assistance, but that there still seemed to be a “disconnect” between “those treating the disease and those focused on healing the patient.”

What I gather from my experience and from Susan’s research is this—we must take control of our own cancer journeys. We just can’t expect the doctors, nurses, or even our stylists to do it for us. One of the best questions that Susan asked in her survey was how respondents would advise other women to take control of their appearance changes. Here are some tips from them, along with a few from me.

• Get a short haircut before you start chemo.
• Shave your head (or make an appointment to have it done) once you start losing your hair. (It’s much easier than picking up clumps off your pillow every morning—trust me! Plus this way, you decide when it happens.)
• Take care of your scalp. You’ll find it’s probably very sensitive once the hair is gone. I give you several tips for scalp care here.
• Take time to find your own post-hair-loss style. I recommend you get a wig before you lose your hair, so you can most closely match style and color, but you may also want to consider scarves (like Susan’s beaubeau), hats, and even going bald, if you feel like it.
• Never feel badly about your emotions surrounding hair loss. Many women feel just like you do. Accept your feelings and do what you need to do to help yourself feel more confident, feminine, and in control of your life. No excuses, no apologies!

Have you experienced hair loss as a result of cancer treatments? Please share your tips for coping.

Women all over the country are striving to find proactive ways to embrace cancer-related hair loss. Even 53-year-old Judy Joppie (from small town Grand Rapids) found the importance of positive thinking by teaching workshops for patients who want to embrace fashionable scarves. “Even through chemo, it was important to me to not look sick,” she explains. “It’s no fun losing your hair, and it’s really hard on your self-esteem.”

So how can you master the art of wearing a fashion-forward scarf? Many fighters prefer cancer-created brands because they carry features like “padding” (to mimic the fullness that hair creates) and are made from more material, so it’s easier to cover the entire scalp. Luckily, there are a wide variety of cancer-supporting companies creating fashionable scarves for patients, including I Wear It Well, who designs childrens’ head wraps with matching earrings for some of the many thousands of young patients diagnosed with cancer every year. Try checking out websites like Turban Plus, Chemo Savvy, 4women.com and Adaptations, Inc., which offer a variety of padded scarves, turbans, or intricate wraps, depending upon your personal style and preference.

When it comes time to wear your wrap, take the advice of “How To Wrap a Scarf” and fold your scarf in a triangle shape, place at the top of your head, and tie at the nape of your neck (to sufficiently cover the head). It’s important to try on a wide variety of scarf shapes and styles before choosing what looks best on you…or wear something new every day! Whether hood-like square wraps or “rosette” turban scarves, there are many ways to wear a scarf and make it match your personality or outfit perfectly. (Click here for more information.) Make sure to pick soft fabrics that will not irritate your sensitive skin, and wash scarves frequently using toxin-free detergents (like Seventh Generation laundry detergent).

In the end, learning to embrace the feminine fashion behind scarves and head covers can help build a newfound confidence, even when dealing with cancer. Cancer fighter YuYu (shown at top) shares a meaningful encounter with a fellow friend: “I went to a support group, and one girl told me that she likes going out with just a scarf on her head because it made her feel like it is a badge of honor as a cancer fighter. She said she does not feel the need to cover up the fact that she is in treatment, but rather proud of it.” Whether you are proud of the courageous battle you’re fighting or simply want to find a comfortable way to cover your head, try out a scarf. You just might love it!

For more information on picking a cancer-related scarf, click here, or learn more about hair loss during treatment with, “Not My Hair! I Love My Long, Shiny Locks“.

* What do you wear: a scarf, wig, or hat? Please share your opinions or advice on wearing scarves!

Photo courtesy of Yu Yu’s Blog For a Cure weblog.

My mom and I in Paris in 2008. (I have my long, brown hair back!)

When I went through chemotherapy at age 16, my doctor assured me my hair was going to fall out. I was devastated! Right then and there was when my obsession with my hair started.

Hair loss typically begins 2–3 weeks after chemotherapy starts. My long, brown hair—which I took for granted (and loved)—started to rapidly thin. I got it cut short (for the first time ever!), because the doctor told me it would be easier for the hair to come out in short strands than in longer locks. I still remember feeling like I was losing a part of myself.

My hair thinned a lot, but it never did completely fall out. I was kind of in the middle—not bald, nor with a full head of hair. I had fuzzy, thin hair with bald spots. Naturally, I had to get wigs. I thought to myself, “This isn’t bad. I can shop for wigs and maybe become a blond for a month or so! How great would it be to show up at Spanish class with a red wig?” But I played it safe and bought a brown wig, which I treated like my own precious hair.

Soon after my chemotherapy treatments stopped, my hair started to grow back again, slowly, but surely. To my surprise (and my mom’s), it came in curly! I mean, my hair was so straight before, it almost required perms. The texture changed too, to something quite fine and fragile. As the years have gone by, I’ve had to learn how to manage hair that once used to be as strong as a rope. I have accepted my fine hair and have learned to take care of it and nurture it.

Now, at age 33, my hair is still my obsession. Below are some tips on how to deal with hair loss, and how to cope with changes that come with treatment.

1. You may also lose eyebrows, eyelashes, facial hair and body hair. Great eyebrow kits make it really simple. I love Anastasia’s 5-Element Brow Kit, which comes with different size stencils. Everything a beginner needs! Also, check out her blog for more tips on brows.

2. The amount of hair you lose is related to the type of chemotherapy you receive. However, expect it to thin quite a bit, like mine did. If you’re a woman, get a short do to avoid messy hair clumps. I cut my hair short 2 weeks before treatment. My dad let his hair thin to the point where he shaved it off. We liked his sleek look!

My dad with his sleek look on his 7th year fighting cancer

3. Shop for a wig before your hair is gone. It can take some time to find the right color match and style. Take some friends with you. I remember we had some laughs as we all tried on wigs. (Check with your insurance company—if they cover the cost of your wig, you can save some money.) Click here to read all our posts on wigs.

4. Be very gentle with your hair. If it’s long, avoid elastics and wear a braid at night to limit breakage. Invest in a satin pillowcase. (Your skin will thank you, too!) There’s less friction and pull while you sleep.

5. Besides wigs, try hats and fun scarves! I sure did—I had a nice hat collection. Hats will also protect your very sensitive scalp from the sun. We love the scarves from Head Covers.

6. If you’re not wearing a hat, remember to use chemical-free sunscreen (with an SPF of at least 30) on your scalp. Your skin as well as your scalp will become photosensitive. Protection is very critical during treatment. Try a natural formula like Burt’s Bees SPF 30 which is free of toxins. (Click here to read about sun-sensitivity during cancer and for other chemical-free sun block suggestions.)

7. Use gentle, natural shampoos that don’t contain the skin irritant sodium lauryl sulfate or sodium laureth sulfate. Choose organic formulas like Avalon shampoos and conditioners. My dad used the volumizing and thickening formulas during treatment. I use it now to add volume to my fine hair. I swear by this shampoo! For dehydrated scalps and hair, work in massage oils like Intelligent Nutrients oil. I love this formula for its amazing natural oils like jojoba and black cumin, which are extremely nourishing and restoring for your sensitive scalp and hair. I also like Organic Dry Scalp Sheabutter—it’s free of petroleum and minerals oils that can clog your scalp pores and not allow them to breathe. Not good!

Remember, losing your hair does not change who you are as a person. It may be hard, but you are still you! I am still me.

Please let us know if any of my tips have helped you—or if you have any tips on hair loss.