Alopecia Areata can bring a lot of change into your life. This condition comes as a shock to many people who may not have heard of it before. Alopecia Areata can be unpredictable. That’s true even for those with previous experience or a family member living with the condition. If you find alopecia stressful, or scary, or hard to cope with, you’re not alone. Millions of people live with Alopecia Areata world-wide. Many of them struggle with the same things. Tools and techniques exist to help ease the way, and there is support available.
Submitted by Nellie – You can read more about Nellie’s journey with Alopecia Areata here.
When my alopecia takes something away from me, there is usually an antidote that restores my equilibrium.
Hair needing to be cut into a pixie once some regrowth comes through? A licence to purchase a new lipstick and eyeshadow colours that compliment my new look. Alopecia Areata progressing to Universalis? A new wig cut into a sharp bob in a shade of blonde that I’d never be able to upkeep with my real hair. Braving life in the outside world without a wig at all? Easier to tackle with a new dress that gives me some extra confidence in my appearance. No hair to tie up or pin back? No need to perpetually purchase hair elastics or bobby pins when they inevitably get sucked into the hair-accessory black hole. Being unresponsive to new alopecia medications that seemed to work wonders for most other alopecians? Focus on other aspects of my physical health, applying for an AAAF sponsorship to playing tennis and stay active, have fun and remember that a bald head need not stop me from doing things I enjoy.
Alopecia Areata can occur at any age. Did you know that it most often first presents during childhood?
Alopecia Areata is a complex condition. A lot of resources about it are very medical and difficult to understand. For very young kids and families supporting them, this can be a challenge. We’ve collected some of our best resources for helping young kids to understand alopecia. These resources can be helpful if a child has alopecia themselves, or if they have family or friends living with the condition.
Heading back to school is an exciting time. Whether you’re headed into a new year or a new school, it’s a time of a lot of change. For young people with Alopecia Areata, school can have some extra challenges and considerations, but there is a lot of support available. Here are some of our top tips for managing Alopecia Areata at school. For more ideas, we recommend checking out our School Pack or Teen Alopecia Support Group.
At this time of year, many people are taking up healthy habits and looking to get active. If you’ve thought about exercising more but find it difficult, you’re not alone. A 2016 study supported by AAAF found that 4 in 5 people with Alopecia Areata don’t get enough exercise. However, we know that physical activity has massive benefits for physical and mental health. The same study found that people with severe Alopecia Areata who did not get enough exercise reported higher rates of stress and were more likely to experience depression and anxiety.
Whether you’re new to Alopecia Areata or been living with it for years, getting active can feel really daunting. Some of the most common concerns are around wigs and headwear, sweat and reactions of others. Love, Alopecia has previous articles on managing difficult or insensitive comments. Here we’ve collected some great tips for managing some of the most common barriers to getting active – and an extra special video at the end to help inspire and empower!
- It’s not your fault.
As long as I’ve had alopecia, there have been people saying “Oh but if only you weren’t so stressed/drank this supplement/didn’t eat this food/rubbed this vegetable on your scalp every night, then you wouldn’t have alopecia”. Alopecia is individual, based on a complex gene interaction, and you didn’t bring it on yourself. It is not your fault.
- Surround yourself with good people.
Take care of them, and they’ll take care of you.
- Children will sometimes ask awkward questions about your appearance, but that’s okay, because they’re young and they don’t know better.
Adults will sometimes ask awkward questions about your appearance, but that’s not okay, because they’re adults and they should know better.
- However, the huge majority of strangers really don’t care that much about what other people look like.
- Lubricating eye drops are a godsend. Go for preservative-free single-use droppers if you’ll be using them for a long time, as the preservatives can have some nasties.
- Master the thousand-yard stare.
Learning how to navigate your way in public with your head up confidently but not checking if people are staring at you is a skill.
- Anyone who doesn’t want to date you because of your alopecia is 100% someone you do not want to date. Sometimes you’ve just got to let the trash take itself out.
- Find your role models.
There are so many amazing, inspiring people out there absolutely #WinningAlopecia. Follow social media accounts that uplift you. Remove the ones that bring you down.
- Brow fashion styles change. Keep this in mind when making decisions about permanent or semi-permanent makeup options.
- Compliments on my hair when I’m wearing my wigs, or on my head shape when I’m going bald (why does everyone do this?) will always make me slightly uncomfortable. That’s okay.
- Health doesn’t mean what people think it means.
Most people think that you start off with a “normal”, “healthy” body, and then something goes wrong. People spend years wondering “why did this happen to me?”. The truth is, there are a million or more different ways the human body can be not-normal. We are all healthy and not-healthy in different ways. Our bodies are unique and different, and things happen for all sorts of reasons and for no reason at all.
- There’s nothing wrong with wearing a wig. You’re not “lying” or “hiding” if wearing a wig feels right to you.
- There’s nothing wrong with being openly bald. Or having patches. Or having thin hair. Or wearing hats or scarves or turbans. You do you, boo.
- Keep a handkerchief with you at all times.
Necessary equipment for managing teary lash-less eyes, drippy noses or the wig sweats.
- You can’t win them all.
Some people might be uncomfortable about your alopecia, or say something rude, or have strong and incorrect opinions. Other people’s problems are a reflection on them, not on you.
- Gratitude is healing. You don’t need to be grateful for your alopecia, but reflecting one what good it has brought you and what you’ve learned can help you find peace with it.
- It’s important to be positive.
You don’t have to love your alopecia if you don’t want to. But for your long-term wellbeing, it’s important to find how to live with confidence, comfort, and in a way that serves you best.
- It’s okay to be upset.
It’s okay to be angry. It’s okay to feel distressed. You don’t need to feel guilty for your feelings because “it could be worse”. You’re allowed to feel what you feel. But always remember that you deserve to be happy and you will be.
- You can choose to move forward.
We can’t always control how we feel. But we can control how we respond to hardship and how we act. If you need support, reach out. It’s there for you, I promise. If there is something you want to do, do it. Don’t let alopecia hold you back from the things you want. Go swimming, get on that rollercoaster, ask that person out. Pushing through our fears is hard, but living under them is worse.
- $8 liquid eyeliner just is as good as $80 liquid liner. You can’t change my mind.
- Helping others helps you.
Volunteering and helping support others living with Alopecia Areata has been the best thing I could have done to help myself find positivity with this condition. If you’re able to, reach out to your local alopecia support organisation (AAAF, Alopecia UK, CANAAF, NAAF and many more) and ask how you can get involved. You could run a catch-up event in your town, take part in peer support, help young people tell their schools about alopecia, and more.
- You’re not alone. You can do this.
What have you learnt from your journey with Alopecia Areata? What do you wish you’d known when you were first diagnosed? Let us know in the comments!
Have you ever been asked a question about your alopecia? How did it make you feel?
Sometimes questions can be okay. Other times, it can be annoying or upsetting, and you may not want to answer.
Why do people ask questions about your hair?
Lots of people have Alopecia Areata. Yet some people don’t know much about this condition. Some people may have never even heard of it. People might ask about your hair because they don’t understand and are curious.
Sometimes, people think that the hair loss is caused by something else. They might ask specific questions, like “Do you have cancer?”. In this case, people might be asking because they feel worried about or concern for you.
Hearing comments about your alopecia is often upsetting. Comments can come from strangers or people you know. Sometimes they are thoughtless or inconsiderate. Occasionally, comments can be deliberately rude or hurtful. This can be upsetting and distressing and may make you angry or tearful.
Having a strategy for dealing with comments can be really helpful. Thinking about how you would like to respond helps you to build confidence and feel prepared.
People making comments about your hair can be difficult. Sometimes, people can say unkind things by accident. They might not mean to hurt your feelings, but they don’t know any better. Sometimes, people can be deliberately mean, rude, or unkind.
So if someone says something about your alopecia, how can you handle it?
Whether you’re hitting the snowy slopes or heading north to escape the winter chill, this time of year is amazing for travel. But travelling with Alopecia Areata can have some new complications and considerations.
We reached out to our Alopecia Support Groups for their best travel tips and advice to create this infographic. We had some amazing ideas and suggestions, and some stories of travel successes and challenges.