Hi, y’all! For several years, I’ve debated on just how open I wanted to be on my blog. I was happy to share tips and tricks that make life with chronic illness easier, but I always struggled with sharing the more personal side of chronic illness.
The pain, the frustration, the side effects of medication and honestly, false hope. It happens a lot. And it is so hard! However, over the last few months, some major changes happened and I personally was looking for a hand to reach out to for advice and inspiration on a journey I never thought I would be on: hair loss.
And that’s why I’m sharing my journey with you. I’ll be uploading a video soon detailing my story, but in the meantime (or if you’re more into words over video), check out my story below.
Since my early twenties, I’ve had thin hair that never seemed to grow much farther than my shoulders. Which is fine! That was cool, I had grown to figure out which hairstyles and hair products worked well for me.
Over the years, I’ve been on so many different medications for my arthritis. Last year alone, I had tried out four different medications with little success.
All had different side effects that weren’t worth the benefit and my body just wasn’t having it. I had started a new medication in November to go along with my bi-monthly infusions to see if we could get my joint pain down a little bit more.
And a side note: a lot of these medications usually have strong side effects when you first start taking them. Patients are often told, “Give it a few weeks, a month or two and your body will get used to it and the side effects wear off.”
First realization of hair loss
Around Christmas of last year, I saw a picture of me with our son and my hair looked like it was so, so thin. You could see my scalp. It shocked me!
And okay, I’m not a vain person, but I’ve always prided myself on the fact that I had relatively good hair that I was pretty decent at styling on a consistent basis. But again… you could see my scalp!
Since I was trying to tough it out with this new medication, I tried to ignore it, hoping that
- I was imagining it. Maybe I was being sensitive and overly critical.
- My hair would come back in a few more weeks.
A few more weeks later, and my joint pain started getting really bad and it turns out, I was one of the people who this medicine makes your arthritis worse. Figures, right? So my doctor had me stop the medicine.
A few more weeks later, my husband and I were getting ready for an event, I was styling my hair. I was really feeling my hairstyle despite the thinness and I take a mirror just to check the sides and the back and…
Oh my gosh, you guys. I saw BALD spots.
I have my makeup all finished, my hair all done and I am trying so, so hard not to burst into tears.
I had been ignoring my hair loss for about a month at that point, not brushing my hair unless I had to, being super gentle. But that was the moment I noticed legit bald spots, where my hair was just GONE!
That week, I ask my doctor about it, and it’s like a 3-5% chance that medicine I was on causes major hair loss. Like… chemotherapy kind of hair loss.
It was really shocking. He said I could continue to lose hair for up to a year even after doing a washout of the medication. There’s no guarantee that it would actually grow back, depending on if it was temporary medication-induced alopecia or it caused me to develop autoimmune type of alopecia that lasts forever.
Over the next few weeks, I am furiously searching for answers. What do I do? How can I hide it? What products can I use because this was medication-induced alopecia. I look up hair extensions. I look up hair growth products. I cry to my husband. I cry to my mom. I cry to myself because I feel so vain about being so wrapped up in my hair loss.
It was a true grieving process. I had gone through denial, anger, bargaining, depression.
I start taking photos to document how much hair I’m losing, which makes me feel worse about it, but I know I need to be documenting this for progress and for my doctors.
I continue to lose more and more when I brush it and when I shower. Handfuls and handfuls of hair despite my hair being super thin and the length was at my chin at the time. It was so shocking.
Finding support for hair loss
So after all of this, I keep doing more research and more research. I create a secret Instagram account as I stumble upon this amazing hair loss community on Instagram.
I’m telling you: The women’s hair loss community on Instagram is straight up amazing. They helped me realize I wasn’t the only one going through this. There are options. Wearing a wig isn’t just for people going through cancer treatments or older women.
After that, I start looking into wigs. And talk about being thrown in the deep end. It is confusing, y’all. There is so much to learn about wigs. The types, the styles, how long they last, the price, how there are so many rip offs out there.
I genuinely was so overwhelmed. My first two purchases were small, tiny hair toppers and as soon as I got them out of the package, they went right back in and returned to the sellers. They didn’t look like me, they didn’t feel like me, they didn’t match or blend at all. And I had no idea how to make them blend, either!
I was still in a bit of denial, too.
Bless my mom. She’s one of my biggest supporters. At this point, I’m still so incredibly embarrassed about my hair loss, talking to her on the phone, and she mentions how maybe I should visit a wig shop. Just to check things out, see what it is about.
Wading into the wig waters
So I did it. I went to a local wig shop. And oh my gosh, I was so nervous. I tried to do as much research as I could, but I was still so overwhelmed. The owner of the wig shop was so sweet and so helpful and had worked with other women who were losing hair at my age. I walked out that day with my first wig ordered and a little less shame about what I was going through.
It’s been about three months since I went to that wig shop, but it feels like a lifetime.
I continue to learn things about wearing hair each and every day, but most of all, I have a brand new perspective.
When I first started telling people about my wig, I was met with a lot of sympathy, which let me tell you: that is the LAST thing someone wants when they lose their hair. We feel like we’ve already lost a lot. We already feel vulnerable and knocked down a few pegs. Being felt sorry for just makes it worse.
Gaining a new perspective on life & beauty
But then! I realized it was all about how I framed it. Yes, I’ve lost a majority of my hair. But the bonus is I get to have the hair of my DREAMS with so little effort. I mean, I style my hair about once a week and it takes me 15 seconds to put my wig on in the morning.
As someone with arthritis whose hands would be in pain after hair drying and styling every day, this was straight up a miracle. It’s awesome. And now, I kind of feel bad for all the women who have to spend all the time, money and stress trying to upkeep their natural hair.
Wigs allow me to have the hair I have always wanted, but was unable to grow myself. Wigs gave me TIME back. Wigs have given me so much energy back. Wigs have kept me from a lot of physical pain, too. Wigs have given me a new perspective on life. We aren’t just our appearances. We are our experiences and how we grow from them.
Wigs have given me the confidence to finally share my story. For years, I’ve been really, incredibly shy about sharing what I’ve gone through the last six or so years with my chronic illness.
And all this time, I truly wish I could have found someone who was going through the same thing that was open with the world about their experience.
I’m now ready to support YOU
Now that I’ve seen how women in the hair loss community have shared their stories – and made me realize I wasn’t alone – it’s made me realize I have no choice but to do the same thing. It’s the right thing to do.
If I reach just one person who is going through a tough time with chronic illness or hair loss… all of this was worth it. I’m going to try my best and make it my goal to be as transparent as possible about my journey and where I’ve been and share with you along the way.
Are you going through the same thing? I’d love to hear from you. Leave me a comment below! Shoot me an email or find me on Instagram to tell me your story (I’ll keep it private!), ask questions, or just vent. I’m here to help every step of the way.
P.S. If you’re wondering, the hair I’m wearing in this blog post is ROMAN by Ethereal Hair purchased through SilkorLace.com. She is a European human hair wig with a silk top and lace front. She’s a one-of-a-kind piece, but she is constantly updating her shop with beautiful pieces!