Losing your hair can be a traumatic experience. Rightly or wrongly it’s one of the fail-safe ways we use to describe people in a short-hand way based purely on appearance: she’s blonde, he’s a red-head (or ginger), she’s got amazing curls… We all tend to identify with our hair, and see it as being an integral part of us regardless of whether it’s our natural colour or not, after all if we dyed our hair we made that decision to choose a particular colour.
So what happens when you start to lose your hair? When clumps fall out in the shower, or you wake up to find hair lying on your pillowcase? Obviously when that first happens it’s terrifying. After visiting a doctor and receiving a diagnosis of alopecia, it’s almost a relief to find out that what’s happening to you has a name, and it’s not as bad as all of the worst case scenarios that were running through your mind thanks to Dr Google.
Theoretically when you know what you’re dealing with it means that you can heal and ultimately your hair will grow back. However that’s not necessarily what the doctors will tell you. They may say that it’s unlikely to grow back. Sorry. Or they may tell you that there are some interesting drugs, for example- JAK inhibitors, on the horizon where hair regrowth is possible for people with alopecia. It’s an off-label use for drugs primarily used to treat rheumatoid arthritis or inflammatory bowel disease. In July 2019 the JAK inhibitor, tofacitinib received a black box warning in the US. It explicitly warned against an increased risk of pulmonary embolism and death. That’s a high price to pay to regrow your hair.
Hair loss is always going to be traumatic whenever it occurs, but being a teenager has got to be one of the worst times. You’re in the process of figuring out who you actually are, and then out of nowhere you’re also now bald. It adds a whole other layer of complexity to growing up. It made my son feel very self-conscious. At first kids at school would point out his bald spots. Then when he decided to shave his head so that he didn’t have to deal with the trauma of seeing new hair drop each day, strangers would either think that he was a skinhead or undergoing cancer treatment.
At a rugby camp other boys were initially afraid to be friends with him. Their first impression was of a skinhead with all of the associated connotations of that tough guy/thug/fascist appearance. We were in the US last Summer, his hair had started to regrow but he was still choosing to wear a cap as his regrowth was patchy. I was appalled to see that strangers would literally stop and stare at him. This didn’t just happen once, this happened frequently during our two week holiday. I did not expect that in Trader Joe’s in California (!) adults would stop pushing their grocery carts to gawp at a teenager with no hair.
Obviously you have no influence over what people choose to think. I was having a dispute with a plumber over a toilet that he’d installed which was the wrong type. He was flatly refusing to fix the problem even though he’d recommended and installed a commercial grade system into a domestic house. Whenever it flushed the entire house shook, and our neighbours were complaining. On one of the plumber’s return visits my son left his bedroom to go downstairs and the plumber just stared at him. The next day he called me to say that he’d replace the toilet.
Over the last four years I’ve met a lot of people with alopecia. Some completely embrace their new look. There are so many gorgeous women who are comfortable in their baldness, and use it to great effect. You can have your eyebrows micro-bladed and/or use stick on or magnetic eyelashes, which are all things that women with hair also do. There’s the option of wearing a hair system, wig or topper. But for every Ayanna Pressley (US House of Representatives) there’s a woman whose extended family don’t know about her illness.
So to those well-meaning people who try and be positive and look on the bright side, please don’t say that “It’s just hair…”, because what you’re really saying is that “It’s just hair, be grateful that you don’t have a more ‘serious’ disease (like cancer)” and nobody needs to hear that because, well, it’s pretty obvious. My son’s hair is now regrowing primarily due to extensive diet and lifestyle changes. It’s possible to regrow your hair even after having alopecia universalis. While it’s not an easy path to take he’s happy to be having regrowth because as a teenager he wasn’t comfortable or happy with being bald. It turns out that it’s not just hair.