For Mother’s Day, we had a chance to chat with Angie who tells us what it’s like being a mother with alopecia and how she’s learned to thrive.
Q. How long have you been living with alopecia?
I have been living with alopecia since 2012. I first noticed it right in the middle of my front hairline. I also have diffuse loss all over my head that has gotten progressively worse over the years. I have been wearing wigs/hair pieces since March of 2013. I decided to “come out” about my alopecia and buzz my remaining hair in January 2016 and I currently rotate between looks – I mostly wear wigs at work, scarves or hats when out at other times, and just rock my patchy buzz cut at home. I’m currently experimenting with wearing scarves at work sometimes and also with sporting my buzz cut outside the house occasionally (so far I’ve only been out in my front yard, but it’s a step)!
Q. How has alopecia affected you as a mother?
When I first realized that my hair was falling out, I became very depressed and anxious. I was obsessed with trying to figure out why it was happening and how to stop it from getting worse. It was hard for me to be fully present for my daughter (who was 2 at the time). It was hard to play games and laugh when it felt like the world was ending! Once I discovered human hair wigs and hair pieces, I started to find a little more acceptance and I was able to get closer to being the mother I wanted to be. Through each stage of my journey, I’ve found more and more peace about my alopecia, which has allowed me to be more present for my family.
After about a year, I got a routine down of what hair I wore in various situations, so it wasn’t such a big interference in my parenting in the practical sense. After my second daughter was born, most of what was left of my hair fell out, so I made the decision to buzz it. When I was home with her on maternity leave, I never wore hair. The idea of wearing a full wig while caring for an infant just didn’t seem like it would work. When I still had some hair, a top piece was a perfect solution for days when I was with my kids because I could wear it up in a ponytail and not worry about little hands grabbing it and it also stayed out of my face so that I could run around with them. But after shaving, that was no longer an option. My priority was caring for my daughters and not being limited in my activities because I was wearing hair. So I made the decision to “come out” and that way I could choose whatever look was most comfortable without worrying about being found out. I try not to let having alopecia stop me from doing anything with my kids. I’m looking forward to swimming in the ocean with them this summer!
I could also say that being a mother has affected the way I’ve dealt with my alopecia! My daughters have kept me from going too far down the rabbit hole of depression because they need me! I didn’t have the option of staying home and feeling down all the time, which was hard, but it forced me to seek support and find a way to cope. I can’t say I always handle it gracefully, but I do the best I can. I hope I can be an example to my daughters that we can get through hard things, as long as we have each other. That life isn’t always easy, but no matter what, we are loved and worthy.
Being a mom has also pushed me to work on loving myself, hair or no hair. I want my daughters to know that they are unique gifts to this world, and that they are perfect just as they are. In order to teach them that, I really have to believe it about myself. I work hard on only talking about myself and my body in a positive way when I’m around them. Recently I’ve been trying to think of my alopecia as an opportunity for me to really know my own worth beyond my physical appearance. I hope that this perspective will have a positive impact on my daughters, so that they will also value themselves for who they truly are.
Q. How do you think having a mother with alopecia has affected your children?
I don’t think it has affected my 15 month old at all, as she is too young to understand or care what my head looks like. I know it has affected my 5 year old, but I actually think it has affected her in a positive way overall. I worried a lot about how different things affected her – my depression, wearing wigs, and then shaving my head. But kids are a lot more resilient than we think! Since I’ve been wearing “special hair” (that’s what we call it in our house) since she was 2, that part is totally normal to her! She likes playing with my mannequin heads and old wigs. In regard to my depression, she has seen me cry sometimes and I try to talk about it in ways that she can understand without worrying her. I think it’s healthy for her to see me having hard feelings and dealing with them in healthy ways. I was probably most worried about how buzzing my head would affect her. We talked about it a LOT before I did it, and looked at lots of pictures of other mommies with alopecia. At a certain point, when I would bring it up, she would say, “I know mom, you have alopecia!” The day I did it was actually really positive. She was a little surprised at first, but then she wanted to rub and kiss my head! She even decided to cut her own hair and donate it to children with alopecia!
I think going through this with me has helped my older daughter (now 5) to appreciate differences. Her teachers always tell me how she is a kind and inclusive friend at school, which makes me feel very proud. We recently had the opportunity to spend a day at the Children’s Alopecia Project Kid Camp, which was a great experience for both me and my daughter. I think it helped normalize alopecia for her, and it was also really fun!
Q. What has been your biggest challenge living with alopecia?
My biggest challenge has been feeling beautiful and feeling comfortable in my own skin. Although I have some different choices in how I want to present myself to the world, none of them are what I would choose if it were up to me. I still feel like I’m getting to know myself without my hair, and I’m still trying to figure how to feel most like “me.”
Q. What has been your biggest triumph?
I think telling people about having alopecia after almost three years keeping it mostly a secret was the biggest triumph for me. I made a Facebook post about it and got the most amazing, supportive comments! I now feel much more free and not like I’m trying to hide something. Being so vulnerable was scary, but it really was the best thing I could have done.
I also had some professional photos taken recently, which was another triumph. I have another mom friend who is a photographer and specializes in making women feel beautiful, especially moms. We both agreed it could be an empowering experience for me, and it was! I did some photos with special hair and some without, and I was surprised how beautiful I felt both ways! It really helped me reconnect with my femininity, which is something I feel like I lost touch with somewhat when I started losing my hair (and also after having 2 kids). Although I am trying to focus on loving myself for qualities other than my appearance, it’s also important to see myself as beautiful, and I think this was an important step in feeling comfortable in my skin.
Q. What words of wisdom do you have for a mom who is newly diagnosed with alopecia?
Seek the support of other moms/women with alopecia who can help guide you on your journey. Through alopecia Facebook groups, I built a network of “alopecia sisters” that have walked me through so many difficult things! They have given me hope that things will be okay. I’ve even been able to meet some of them in person. I only wish I could be around them all the time!
I would also suggest getting involved with some kind of alopecia support network if one is available in your area. There are NAAF support groups, Bald Girls Do Lunch, or you could create your own! I really enjoyed my experience with the Children’s Alopecia Project and I hope to continue my involvement with that organization. It’s all about helping children with alopecia to thrive and love themselves!
Educating people in my life about alopecia before and after I “came out” was also really helpful. I talked to my daughter’s preschool teachers before I shaved my head to let them know what was going on and how to talk about it in case my daughter brought it up.
Lastly, I think it’s important to prioritize our own self-care. As Moms we often think about everyone else’s needs first, but I think it’s really important to give ourselves space to feel our feelings and also do things that make us feel good about ourselves, whether that be exercising or talking to a therapist or buying some new clothes. Our kids will learn from our example that it’s important to take care of themselves, too.Social tagging: alopecia areata > alopecia universalis > autoimmunity > mindset > support > support group > thrive