Hi, my name is Brittany
This will be a pretty short story. I started to lose my hair October of 2018. What started as a quarter size patch of hair loss turned into about 80% hair loss today. My dermatologist diagnosed me with alopecia totalis, but said there is a possibility it could turn into alopecia univeralis. I have not had the courage to shave my head yet and wear wigs when out in public. I am having such a hard time coping. This autoimmune disease has really taken a huge part of me away. I already stuggle with really bad anxiety and it has intensified to the enth degree. My relationship, of coarse, is falling apart at the same time as all this and I don't know what to do.
I wanted to see if you all had any coping strategies or tips of some kind. I feel like I am so alone through all of this. I also wanted to see if you all know of any products/diets that have worked? I have done the shots in my scalp, the only thing that seemed to work was the Prednisone and I couldn't take it anymore, it was making me feel TOO WEIRD!
Thank you for taking the time to read this as I cried and sobbed the whole time I typed it.
First, I just want to let you know you're not alone. I had a lot of anxiety about alopecia (and still have a lot) especially through school but at 26 now I've had the long journey of acceptance. I realized how much of my anxiety revolved around other's reactions to my alopecia. What helped me was repeating a mantra "worry about yourself". I found great friends who supported me for me and not my appearance. In situations where I had to take off my beanie, I made sure I was with someone who understood the anxiety I felt and told them ways that would help me feel less anxious. For example, I love amusement parks but I hated taking off my beanie. If I went to an amusement park my friends would always let me take the seat furthest away from the line of people. I would focus on worrying about myself. Making sure I was having fun. Nothing anyone could say could change who I was at my core.
(Figuring out what my anxiety revolved around and how to work through it took some great books, and therapy, and a lot of lessons)
I would also stress that shaving your head, going bald, wearing wigs, wearing a hat or beanie, these are all your choice. You don't have to shave your head if you don't want to. In fact, you never have to shave it if you don't want to. Experience and reflection are keys to living well with alopecia (I write a blog about it). Experience different styles, hats, wigs, and reflect on which one made you feel most comfortable (it may change from time to time and that's perfectly okay)
Lastly, I would say you gotta figure out what makes YOU happy and comfortable. Is it time alone? Sitting in front of the TV watching Netflix with a glass of wine? Hanging with good friends? Cooking a meal? Dancing like nobody is watching to your favorite artist? These things should be completely yours. I hang with friends because I enjoy the company of them and I had the time and energy to do so. If I'm having a low moment and I need time to myself saying no is the best thing. If you're having a rough day choose one of those things to do regardless if you have to do it alone.
I hope any of that helped! Sorry, it was so long! I'm open to sharing all of my experiences so don't hesitate to reach out!
Thank you so much for the reply. It was so insightful and empowering. I am struggling a lot with confidence with all of this. And you are exactly right, that's where most of my anxiety is coming from, is thinking they are judging me. That is a mantra I will have to incorporate into dealing with my anxiety. I just recently started meditation as a medicine-less approach. I love that your friends are so supportive. I don't think my friends or family understand how much it bothers me. Plus, the fact that I don't reveal it because I'm Embarrassed.
I'm glad you still can go do the things you love. This will actually be my first summer with no hair and I worry I won't swim because I won't go out without a wig yet.
I know you said books, therapies, and lessons. What types of books, if you don't mind?
When I am at home I wear a beanie as well. It's a comfort/security thing to me.
Thank you so much for the reply! I would love to hear your experiences because I am just now having my own.
Incredible book! It's called A New Earth It's about mindfulness and striving to be happy in the moment. I wear my beanie at home too! It feels safe (but also it can get cold up there with little to no hair!). I'm a hoarder of quotes and things so ill do some digging for other books and things to share. There is also this really good essay called "The Pain Scale" by Eula Biss. It's about a lady with chronic pain and she's helping the reader come to an understanding of what it's like living with that pain by comparing it to the hurricane scale. It's magnificently written #goals.
Only recently have I been writing and talking about my alopecia so openly. I was also super embarrassed and people didn't understand how big of a deal it was to me and how much I struggle with the anxiety from it. But for me, I realized if I never had these open and honest conversations with them I could never escape that pattern.
My therapist helped me with the understanding that the future doesn't exist and I would overthink and let my anxiety ruin me over what I thought someone's reaction would be. " If I tell them they will laugh." But at the moment I only had to choose to tell them or not and try not to let my mind fill in what could happen. The book (A new Earth) helped me realize too how often I would create a negative future. Even though I'm optimistic that fear of the negative future controlled me. Another manta that helped in these moments was " Be here now" whenever I caught myself building a negative future. (I might get those 2 mantras tattooed on me, I say them that much lol but they really work for me.)
I also love being in the water but have so much anxiety around it because of alopecia. So I try to make sure I can control when and where I'm in the water so I'm the most comfortable. That might look like getting a hotel with friends (or myself) that has a private pool for each room. There is also a national conference I attended for alopecia and the pools are full of bald heads! It's was so inspiring! It became one of my happy places where I feel super comfortable and make an effort to attend.
I have alopecia areata so my hair is constantly growing and falling out which can be stressful but I refuse to shave it off because I love the hair I do have! I love my beanie too. I feel most comfortable right now with the hair I have. The more you reflect and meditate the more you'll discover the amazing things that make you who you are, regardless of appearance.
I will have to check out that book, I could use all the coping mechanisms I can get!
It can get a little breezy can't it? It is such a safety net, who would have thought?
I will also have to read that essay. I'm putting this stuff into my notes on my phone so that I remember. If you don't mind me asking, how old were you when Alopecia started?
Sometimes my hair comes back, but it's white and usually falls out again. I'm probably still considered alopecia Areata because I haven't lost it all about 80%. How long of a process was it to start coping? I just feel angry at the world and really sensitive.
Do you still talk to a therapist? I know a lot of questions coming your way, I'm sorry. That's why I don't shave either, it may not be much but I still have it.
Do you go to alopecia gatherings often? I've never been, sounds liberating! You're only the second person I've talked to with alopecia, but it's such a great supportive community so far!
I was around 8 years old when I was diagnosed. No apologies needed! Keep the questions coming! I'm here to share what I can.
I usually have thin white hairs but most of the time they never darken and disappear but I still support those little guys! I had the most hair I've ever had since diagnosed last year but I lost almost all of it again.
Right now I'm looking into my diet and tracking certain things just to see if it makes a difference. I've heard reducing processed sugar helps promote growth but I have a massive sweet tooth! I still have to take into account my quality of life lol.
That was my first alopecia gathering. Normally I try to spend time around people I feel comfortable with, a small group of close friends, since being around others really helps with my depression/ loneliness that can creep up (except we all social distancing now) but I have things that keep me happy regardless if they are present. Music is huge for me and video games and keeping busy. And writing has been huge for me.
Someone at the conference said she has found that those of us with alopecia, are just great people because we've been through a lot and have genuine care and empathy for others. I 100% second that from my experiences with others who have it.
It's an ongoing process of coping. Anger was really big for me. I'm writing my next blog post about it! And it's okay to be angry! (As long as we don't take it out on anyone else or let it control our decisions.) We're all human and we feel all the emotions including anger. Really the last two years I really finally decided to get serious about self-love. Serious about reflection and getting to know me. I was finally ready that's why I started my blog. Its been about 18 years for me. But that was 17 years of not being open and honest with myself.
I 100% would still be talking to my therapist but I'm currently looking for a new one. I lost my health insurance when I made the decision to be a freelance designer and blogger and couldn't afford her but there are low budget options available and a couple of friends have shared some options for me. Honestly, I think we could all benefit from a little therapy lol.
That is very young. Did it come back again? That’s what I struggle with is that they are so thin that they usually fall out all over again. A little bit of false hope lol. I too am on a very restrictive diet to see if I eliminate a certain food if it will help with hair growth. I currently cut down to less than 10g of sugar and I have a massive sweet tooth.
I will eventually try the AIP Diet but dairy is a little harder for me.
I would really like to go to one of the get togethers.
Probably would be a lot of fun and to not feel so alienated. You know I would have to agree with that statement as well. This is the hardest thing to cope with. I will have to check out some of your blogs. I’ve got a long time coming to cope. Meditation helps me a lot. Therapy would probably be best but I dont have insurance either which makes it really pricy
I've always had it since childhood. The spots move around and have a mind of their own. I'll regain hair in some spots and then a new area will thin out. I try to be at peace no matter what's going on up there lol. Take it day by day. And don't hesitate to reach out if you ever feel overwhelmed.
I hope you are in a better place now. I just wanted to say that you are beautiful and you are not alone. I have never tried any products or medicines. To cope I really try to take care of myself, love myself, build my confidence. Working out helps me a lot. Kickboxing, boxing, running, lifting weights and I like to read, take hot baths, have quiet time and pray. And at times I cry. Crying helps and it's okay when you need to. Whatever it is that you like to do or will help you to relax do that. Easier said than done at times but you are important and how you feel is important. I wish you the best.
thank you so much for the response! I am in a better place now. I can’t say that I’ve completely accepted it but it is so much better than in the beginning, I don’t cry everyday anymore. I have been trying to eat a little better and have been walking. I’m not very active but trying to turn towards that. YOU DO A LOT! Lol it is nice to know I am not alone and the Alopecia Community is so welcoming. This means a lot to me. I just recently found bald spots in my eyebrows too. How long have you had alopecia