For many women, coping with hair loss during chemotherapy treatments can be one of the most difficult challenges of cancer. Susan Beausang, founder of “4women.com” and one of the contributors in my book (When Cancer Hits), has researched the topic of hair loss to determine just how much it affects women and what they can do about it.
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.