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” 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.
I’m on the same journey. I no longer have breast cancer as it was removed in late April. But I have started the chemotherapy and have my third of six on the 29/07 which will be half way through. I tried to save my hair with the cold cap treatment but three days before my second chemo my hair came out if I put my fingers through it. I then got the scissors and cut most of it off and then it wouldn’t stop coming out. So I asked my husband to put the clippers through it on a grade 2 setting. I’ve just gone trough the worst time with foliculitis. My head was covered in red itchy blotches and my Doctor prescribed 1% hydraquartosone cream twice a day. Along with paracetamol to keep the heat down, and antihistamine. Just as I was seeing progress I have got a really bad cold and I am in bed resting. I also get a sore mouth and have a special mouth wash to help calm it down.
On the bright side I have a lovely wig that I got pre treatment which I wore pre rash and everyone thought it looked fab. I have lots of friends who constantly text or email when they cannot get me on the phone to ask how I am. They cannot believe how positive I remain. I have friends who I’m spending the New Year with in a log cabin in the country side. My treatment should end 23rd December if nothing gets in the way.i have 20 radiotherapy sessions three weeks after chemotherapy.
Then I want to book a holiday with my husband once I’ve got the all clear. Just try and put all your negative feelings into a different department to the positive and concentrate on the future after treatment. I haven’t cried once. I have still got my eyelashes and eyebrows mabe they will drop out next week, but what’s a few more hairs. It’s only six months out of the rest of your life.
Thank you, Pam, for sharing your story. Cancer puts us through a lot, there’s no doubt, but you have the right idea—keeping your eye on the long-term. Side effects do pass eventually, and your overall health is what matters. Hang in there and don’t forget to do something nice for yourself—often! Let us know when you’re treatments are over. :O)
Mish, I am so very sorry. I definitely can relate, though it sounds like what you went through was truly horrific. Please don’t think that you will feel this way forever, and definitely don’t feel badly about how you feel! I, too, just sobbed when I realized my hair was coming out. It’s a totally normal reaction, especially for women, because so much of our personal identities are wrapped up in our hair. It’s part of our femininity, and our idea of ourselves as women.
But TRUST ME, you CAN and you WILL feel good again about how you look. No, it won’t be the same as before. Nothing ever is after we go through something so difficult and traumatic. But you will regain your confidence IF you put your own self-care first. Make it a priority, starting today. Find something to do each and every day that makes you feel good about yourself. If you don’t like your hair (lack of), look at your hands. What about your fingernails? Are your legs still holding you up? Your eyes still expressing your emotions? Your teeth still strong? Find “something” that you can feel good about, and work from there. Then get yourself to the store and find something—anything—that makes you feel pretty. It doesn’t have to be expensive. A ring. A necklace. A new fragrance (though I always recommend natural ones!). A lovely scarf. Get a friend to go with you if you like. Every day—even the days you don’t feel like it—do something that makes you feel good about yourself. Another tip—it might be doing something for someone else. Giving always makes us feel great!
Then you can get started shopping for wigs or hats or whatever you choose to go with. Create yourself anew. Find a new look that matches who you are today. Try to have fun with it. You’re a survivor! Show your pride in your strength and courage.
Realize, too, that what you’re going through is very similar to PTSD (post-traumatic stress disorder). I would strongly advise you to get some help, either from a counselor or group therapy or even an online forum. Find some people you can talk to about how you feel that will understand what you’re going through. It’s truly restorative.
I’d love to hear how you’re doing. Hang in there. You have all my love and good wishes! 🙂
Hi Britta, Thank you for your response. It’s nice to hear from someone who has also gone through it. I find it interesting that you say cancer takes away your identity and leaves you to figure out who you are – I have not thought about in this way but you are right. Cancer changes not only how you look but also your whole way of thinking. I know I have changed in this sense and just as you said, you grow to be a more compassionate, grateful and definitely stronger person. It’s an ongoing process, and though this may sound weird, I cherish the lessons this journey has taught me. I am only 18 and I like having this whole new outlook on life. Take Care. Sincerely, Sabrina.
I would like to thank you for posting these articles. I am an eighteen year old female and I recently went through my journey with lymphoma. I had long hair ( down to my mid back) and very thick, it was beautiful. At the time I tried not to let it bother me and I went through all my chemotherapy treatments thinking, “whatever, it’s just hair”. Everyone told me it was going to grow back beautifully and it wouldn’t take so long. Well, it has been nine months since my last treatment and my hair has only grown a tiny bit. I cannot really comb it because it has just grown back so curly and unruly that I have to put a lot of gel and spray to keep it down. I started college and at first I said I’m going to own my hair. I am the only girl in my classes with short hair, and while i originally felt unique I have recently felt sad. I was looking at old pictures three days ago and that was the first time I allowed myself to cry over losing my hair since I’ve started this journey when first being diagnosed with cancer. And although I try to cheer myself up by telling myself i’m done and am in remission it still hard. I had expected it to be at least longer than just 3 curly inches of hair. Therefore, if youre experiencing the same issue as me just try to understand it will grow and the day it does you will own that hair. I get myself happy by thinking about the tears of joy I will shed when I get my first hair style cut once it has grown long again. Imagine how much more you will appreciate your hair. And for now look at it as a symbol of what you’ve gone through and wear it proud because I know my journey with cancer taught me life lessons and to appreciate my life. I always like to think all those who are currently battling cancer and those who are in remission are my extended family because we have all gone through something only we can understand how it felt. I will forever know I am not alone and I hope you understand that too.
Hi, Sabrina. Thank you so much for writing in and sharing your story. I understand completely what you went through. My hair was long and shiny before my cancer treatments too, and it was very difficult for me to watch it fall out and become dull and brittle. The regrowth period always takes longer than we want it to, and you were right to finally grieve for the loss, because it’s more than just hair—it’s your identity. Cancer has a way of taking away your old identity and when it’s over, you have to go through the process of figuring out who you are now. You really are a different person, and will never be the same again, so it’s perfectly normal to grieve the person you lost. It sounds like you are doing everything you can to embrace your new self now, though, and I applaud you! I’m sure you will emerge as a stronger, more compassionate, and more grateful person as I did, and you will be a beacon for others going through the same journey.
All my best!
Oh, by the way, I had my husband shave my head, and there was something empowering about that. It was a family thing, and my 8 year old and 5 year old were able to cut some pieces first, so it was all our doing, as a family, rather than what the medecine did to me.