Taking the Plunge: Telling people about your Alopecia

There was a time in my life where I would’ve preferred to run 10 km in spandex through Melbourne CBD than tell any of my friends about having Alopecia. Luckily, as I got older, I realised that people probably wouldn’t act like I’d committed a mortal sin for having the audacity to get a chronic illness. It was a process. That being said, I’ve had some amazing experiences and some not as good experiences when telling friends about this condition. Whether you want to tell your whole school, someone at work, or a new friend or partner about your alopecia, it can feel pretty scary. But with the right preparation and the proper tools, it doesn’t have to be. Learn from my mistakes Young Padawan and stock up your arsenal of awareness weapons. 

-Stef, AAAF Support Ambassador

 

The Key Information about Alopecia Areata

You know that moment when you think you’ve been coherent and then you realise all you’ve done is mumbled at the floor, yelled ALOPECIA and then looked at the other person expectantly? No, just me? Well, there are a few things we can do to avoid that ‘huh?!’ facial expression we get when nerves got the better of us. It’s all about getting the facts straight and doing a bit of preparation before you take the plunge. Here are some things to cover.

  • What is Alopecia?

Alopecia is a condition where your hair falls out. There are three main kinds: Alopecia Areata, which is where you get patches of hair loss on your head, Alopecia Totalis, where all the hair on the head falls out and Alopecia Universalis where you lose all your hair on your entire body, including your eyelashes and eyebrows. Hair loss is the only symptom. I have …

  • Is it contagious?

It is our hope to infect as many people as humanly possible so that the whole world will one day be egg heads like us Alopecians. KIDDING. You can yank their chain for a bit, but eventually tell them that they won’t be able to catch it from you.

  • What causes the hair to fall out?

Everyone has an army of soldiers in their bodies called the immune system. It’s supposed to protect us from nasty things like coughs and colds. Unfortunately, our immune systems are a bit overzealous and attack our hair as well. That’s why it falls out.

  • Is there a cure?

There is no cure and few treatments. However, there is this fabulous charity who is trying to change that, so you can head to their website and find out how you can help (hint, hint.)

  • Will it ever grow back?

We don’t know if our hair will ever grow back. Sometimes it does and sometimes it doesn’t. If the world is feeling particularly mean it can grow back and fall out many times.

 

Everyone is Different

There isn’t a foolproof ‘how to tell you friends formula.’ If there was, I would probably be selling it instead. Try a couple of different ways of doing it and see what works for you. You can reflect on your experiences by asking yourself these questions:

  • What went well?
  • What didn’t go as well?
  • What could I do differently so that what went wrong doesn’t happen next time?

You can do it one on one or just rip off the band-aid and do it in a group. Do whatever makes you feel the most comfortable. You’re already taking a massive step so you don’t need to make it harder for yourself by doing what you think is the ‘right’ thing to do.

I know it sucks, but you’ll probably get a variety of different reactions from people. Just recently someone thought me having Alopecia was wicked and that I looked stunning in my headscarf. Another looked at me and said ‘nahh not a fan of the ‘bandana thing’. I’ve found telling people an awesome way to filter out the good friends from the ones that give you grief down the track. I just want to make the really clear:

It should not matter to your friends that you don’t have hair.

The aim of being honest about your experiences is getting to a place where you can say to someone, ‘I’m going out in a headscarf today and I’m feeling really nervous’ or ‘I’m having a bad time right now and need your support.’  The worst thing in the world is feeling like you have to go through this alone. You don’t. There are people out there who will have your back. You’re awesome, and worthy of love and friendship.

The Telling Friends Toolbox

Here are the things I need when telling someone I have Alopecia.

  • A stable base of support so that there isn’t just one person supporting you (vital)
  • A plan of what you’re going to say so your nerves don’t get the better of you
  • A safe and neutral place to do it.
  • A good segue from normal conversation. I can’t even tell you the number of times I didn’t tell someone because I ‘hadn’t found the right moment’ in the conversation.
  • Make it clear that they can ask you questions and that you are more than happy to talk about it. I didn’t make that clear to one of my friends and she went about 5 months thinking that my wig was sewn onto my head. My bad.
  • You might have to bring it up a couple of times before friends are comfortable discussing Alopecia with you. I like to crack a joke about how boring it would be to be stuck with a hairstyle or how I never have bad hair days. Humour is a great way of lightening the mood.
  • A list of people you can call who know about your condition, just in case it doesn’t go well.
  • Create a little action plan of what you’ll do just in case the worst case scenario whizzing through your head actually happens. It’s could look a little something like this:
    • Call a friend or family member who knows about your condition so you can talk about it.
    • Do something nice for yourself. Watch that episode of Game of Thrones you’ve been saving. Read the book that’s been collecting dust on your bedside table. Do something which makes you feel good about yourself.
    • Reflect on what happened. Did you not give them the tool they needed to properly support you or are they a good person to have in your life?

You’re a badass

Now repeat after me: ‘I am a badass.’

And once more. ‘I am a badass.’

You got this covered, but just in case I’m going to give you one last tip to take away.

Be mindful of what your body is doing during these tough conversations. Your posture actually affects how confident and powerful you feel. Every time you want to hunch over and cross your arms say, ‘no!’ Square your shoulders, lift your chin and straighten your back – within reason of course. You don’t want to suddenly look like a drill sergeant.

That’s all from me, so be bold. Be bald. Be you.

Love, Alopecia

 

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