At The Vitiligo Society, we share personal stories because many people with vitiligo have never met anyone else with the condition, which can make the experience feel isolating and difficult to understand. That’s partly why AJ’s story stood out. While most people go years without knowing another person with vitiligo, AJ found himself in the unusual position of already living with someone who had it – his cat, Banani. She was diagnosed just a few months before him, and, as he explains, learning about vitiligo through her actually helped him make sense of his own diagnosis when it arrived. Here is their story in AJ’s words…

I first noticed something about three years ago. I was 35 at the time, and I noticed a lighter patch right at the top of my inner thigh. I thought it was a scar at first, but it quickly spread, and I realised then it wasn’t something I had done to myself, and it might be something like vitiligo.

At the time, the idea of a diagnosis would make me feel more comfortable for a lot of reasons. It spread rapidly to my hands, my legs, and my face, and I had heard that vitiligo could be a symptom of another underlying condition. I wanted to be on the safe side and get it checked out, but also understand what the future might hold for me as my skin was changing very quickly.

It was quite anticlimactic, really. I had spent some months prior to the appointment not knowing for sure if it was actually vitiligo, and within 30 seconds of the start of my appointment, she told me without any doubt that it was. I’d built that moment up in my head beforehand, but when it actually came to giving it a label, it happened very quickly. I had over-thought it, really, but it wasn’t a big deal at all. She was able to tell me for sure that it was vitiligo, but not why I had suddenly developed it and what the treatment options were at that point.

I was referred to a dermatologist a couple of hours away, who I would visit a month or so later. I was also given blood tests on the same day to check on my thyroid, or anything else they thought might contribute in some way. I was also asked if I was experiencing any significant increase in my stress levels lately. I was working in a particularly high-pressure job at the time, so we had a chat about that and I learned that it may be related.

I knew what vitiligo was, but only in the most basic sense that it was due to a lack of pigment in the skin. I had no idea what could cause it, or even that it was possible to develop it spontaneously at some point. Bizarrely, I had taken one of my cats – Banani – to the vet only a few months prior to my first vitiligo patch, where she was diagnosed with vitiligo, too. The vet was very surprised to see a cat come in with vitiligo, as it’s pretty rare in cats. It was her diagnosis, and the vet’s reassuring, “it’s nothing to worry about,” that helped me with the early stages of my vitiligo, and coming to terms with it myself.

It’s progressed a lot and covers basically all of my extremities; my hands, feet, my groin and my face are all visibly affected. Anywhere my skin pigment is a little darker, it’s very visible, like my elbows or my knuckles. It moved very fast in the first 12 months and seems to have settled a little since then, but every spring time when the sun comes out and I get a little tan, I can see it’s progressed rather a lot each winter.

When I first noticed patches on my face, that was harder for me to deal with than anywhere else up until that point. I realised then that it would be something everybody would notice, and it would become part of my identity from then onwards, and that was more difficult to accept. At the same time, my groin area was very visibly affected, which comes with another kind of emotional difficulty. It has the potential to affect your confidence when it comes to intimacy, or in places like public changing rooms. You never know if people know what vitiligo is, so it was tough to come to terms with the idea that people might think there’s something wrong with me, or I might notice them looking a little longer at me than I was used to. Depending on the body part in question, that can be a little unsettling!

Initially I was quite anxious about it, especially prior to the diagnosis. Each day I would look carefully to see if it had spread and I became pretty fixated on it. I think I was convinced it would spread and spread until my whole body was covered and that became a big worry for me. After the diagnosis, I settled down quite a lot and felt much more comfortable mentally.

I spent a lot of time before my diagnosis searching on Google, reading people’s experiences of vitiligo and seeking diagnoses or treatment from people on forums, or places like Reddit. Unsurprisingly, the advice was always the same – go and see your doctor! Getting help online is no substitute for talking it through with a medical professional. I was surprised by how much of the conversation online was around different causes, or treatments for vitiligo, so many of which came from unverified or unreliable sources. It was harder than I thought to find information that didn’t seem totally speculative, but it’s a condition that isn’t always easy to pin down to a specific cause or trigger, so I suppose that’s why.

I posted in a couple of online community spaces, but the conversations there were so focused on treatment and prevention, and that wasn’t what I was pursuing at the time. It’s also something which is seen very differently in different parts of the world, so it was hard to find conversations amongst like-minded people on the subject.

Initially, yes, I was embarrassed about it and worried about what people would think. When I had my appointment with the dermatologist, I was presented with a few options, but it ultimately boiled down to two; try to manage it with various treatments like skin creams and immunosuppressants, or accept it. The dermatologist actually said the second option would be to ‘learn to love it’, and that resonated with me a lot on the day. That’s the direction I chose to take, and for me that choice was very liberating. Rather than rocking my confidence as it had done before, my choice to embrace my vitiligo – and how unique it makes me – completely changed my mindset and helped me to accept myself in an entirely new way.

I’ve never tried to conceal it. I’m fortunate I suppose that my skin is naturally quite pale, so in some light and some situations, it’s probably not that noticeable. I honestly wouldn’t know how to conceal it!

I live way out in the countryside, and my social circles are pretty small, so it’s not had a big impact on my day-to-day. However, my career has me sharing so much of myself online that it has inevitably come up in the conversations I have with my online community. It’s been interesting for me to share that aspect of myself publicly, and see just how accepting people are generally of it. Most people are honestly just intrigued by it; what causes it, that sort of thing. Most people say it’s interesting, or even beautiful. I love that.

I’ve had such mixed reactions from people. Someone I was in a band with here in France noticed it one day, and said at the top of their voice in front of a crowd, “Eughhh, what’s wrong with your hands!?” I also had someone ask me if my vitiligo was ‘shedding’ (I think they were worried I was going to make a mess), and I’ve also been asked quite often if it’s contagious. For the most part though, people are grateful for the vulnerability that comes with talking about it, as I think a lot of people are curious about it but don’t know the best way to ask questions without causing offence. I don’t mind talking about it at all, and when people realise that I notice they visibly relax.

Beyond the moment with the dermatologist, I would definitely say that my experiences with the public on social media have been overwhelmingly positive about vitiligo. That’s really taught me that the majority of people don’t even notice, and those that do are so rarely going to judge you negatively. Experiencing this first hand has been really helpful for me in accepting vitiligo into my life.

At the moment I’m in a really awkward middle phase, especially on my face. It’s not covered enough of my face that it’s entirely obvious what’s going on, and I have a bit of a panda-eye thing happening with one of my eyes where the pigment is still there. It just looks like I’ve got dark circles and I look really tired! When I am feeling more tired or run down than usual, I really notice this and it makes me struggle to like what I see in the mirror, or my phone camera when I’m posting on social media. I’d almost prefer it to spread and progress all the way so this isn’t the case, but it might never do that, and that’s ok.

Generally I don’t think people notice (or at least they don’t comment on) my vitiligo, but once I tell them the story about Banani they’re very curious about it. It’s so unusual, and the conversation usually veers towards conspiracy theories or possible nefarious causes for us both to have developed it at the same time! I just see it as an extraordinary coincidence. I have three other cats, and two dogs, but Banani and I have a bond that’s extra special thanks to our vitiligo.

Try not to worry, if you can. The important thing is to make sure any other associated health conditions are looked into first. Yes, your appearance may change, but remember to be as kind to yourself as you would be to anyone else. There are a lot of great options when it comes to vitiligo, and one of them happens to be taking the opportunity to learn and love something new about yourself, if you’d like to.

Honestly, if people knew it wasn’t contagious, or caused by me being vegan… I’d have a quieter life!

I guess I never imagined something like this would affect me. It’s interesting to me that it happened for me in my 30s, and what that’s meant for me coming to terms with my appearance changing in such a way at this point in my life. I can imagine it’s more turbulent for people who develop vitiligo in their childhood, or in their teens, and I hope that raising awareness about vitiligo can make things easier for people who might be going through that.

I hope that by being open and vulnerable about it makes other people feel more comfortable. Whether it’s someone who has vitiligo themselves, or someone who’s curious about it and doesn’t know how to discuss it; I hope that seeing someone like me talking about it makes it easier for someone else. Working with The Vitiligo Society is an honour, especially if it leads to anyone feeling a little bit less alone.

Follow AJ’s story ok TikTok and instagram @ajthisway