It’s clear from social media, and daily conversations (at a distance) that everyone is experiencing some degree of stress at the moment; it might be related to health, finances, being separated from loved ones, or all of these. At Alopecia UK, we are learning each day of how COVID-19 is affecting those with alopecia specifically. As well as the stress the current situation puts upon the majority of the country, there are specific difficulties that only those with alopecia will fully appreciate.

We are hearing from people who are worried about the following:

• Reduced access to wigs or hair systems
• Wig salons and hairdressers closing with no information on when they will reopen
• Being unable to get face to face GP appointments
• Cancelled dermatology appointments
• Being unable to access ongoing treatment
• Worries from key workers with alopecia having to change style hair or wigs differently to comply with more stringent infection control

Sadly, the only thing certain about the current situation is that everything is uncertain. We know that salons are closed for the foreseeable future, and there is no access to face to face wig or hair system fittings for anyone. To the best of our knowledge, dermatology appointments are being cancelled or happening remotely. Speaking to colleagues in dermatology it is hard to say this stage when face to face appointments will be offered or how this will affect future waiting times.

If you are hoping to buy a wig in the coming weeks, we encourage you to look at individual wig suppliers’ websites, and contact them directly if you have any questions about how their services have been affected. It is also worth checking if there are any changes to their usual wig return policy before you buy.

Recognising that hair loss is causing additional challenges at an already stressful time, we wanted to put together some information that might be helpful to manage some of the difficult thoughts and feelings that you may be experiencing right now.

Its ok to not be ok

The first thing to say is its ok to not be ok. Just because the world feels as though it’s been turned upside down, it doesn’t suddenly mean you are no longer concerned about your hair. We know, even before COVID 19 came along, that many people with hair loss feel guilty for worrying about their hair, and some report being told they should feel ‘lucky’ its nothing worse. At Alopecia UK we don’t believe anyone should feel like this. Hair loss has a massive impact, and it’s ok to feel down and upset about it, no matter what is going on.

What we need to do is to think of some helpful ways to manage how we feel about it.

Dealing with uncertainty

Learning to tolerate uncertainty is difficult, but there are things we can try which might help us. There is no easy way to manage this, but we need to learn to be able to tolerate uncertainty:

• Try and focus on the here and now
• Notice when you are worrying about the future and bring your thoughts back to the present
• Look at what is in your control and focus on ‘controlling the controllables’

Self-care

Self- care isn’t as easy as it sounds and research suggests that people who have low self-esteem really struggle with prioritising their own needs. Use this time to try and prioritise yourself. Make a list of all the things you would like to do for yourself (obviously, for now, keep these to things that can be done at home), and how you can fit these into your daily routine. You might include:

• Hot bubble baths on an evening to de-stress
• Reading a good book
• Trying out a new hobby
• Exercise (within your own abilities)
• Creating a calming place for your own relaxation in your house
• Focus on what you can do during this time, rather than what you cannot. Developing your skills is a great way to boost self-esteem.

Considering your headwear options

At Alopecia UK we know people have different ways of managing their alopecia. Some people wear wigs, some choose headwear,some use combinations of wigs/headwear and others choose not to wear head-coverings at all. If you are struggling to access wigs or hair systems during this time when salons are closed perhaps you could look at the different options of headwear? You can read more about the different options for hair loss here. It may sound scary but being at home might be the time to try different options and see what you feel most comfortable with. If you worried about people noticing your hair loss because you are still around others (e.g. key workers), you may still want to consider your options. Most people are likely to be too distracted right now to notice. You never know, you might find another option of headwear, and if not, once the situation is over you can go back to your preferred option, know that you have tried other things. If you are a key worker, you may find it much easier to keep on top of the increased hygiene regime by switching from wigs to headwear. We have a limited number of AUK tube scarves that we are happy to send free of charge to NHS key workers should you be needing to switch from wigs for the short-term. Please get in touch with us if you think you would benefit from one.

Managing worry about people ‘finding out’

We are hearing from people who are worried about not being able to access their usual wigs because others might realise they are wearing a wig. We understand this anxiety, and whilst we are not saying it is easy there is a need to find a way to manage those worries. It may help you to feel more in control if you set out a plan of how you might respond.

Consider the questions below. You might want to write down some of your responses.

• What are your worries about how people will respond to you wearing a wig?
• Looking at these worries and thinking about the people you love and care about – how likely is it you think these people will respond in this way?
• If someone was negative towards you for wearing a wig – what do you think that would say about them?
• How would you respond to someone wearing a wig?

Think about how you would respond to any negative comments, perhaps make a list of responses. You might be feeling overwhelmed with negative thoughts right now. It’s completely understandable and very normal. It’s likely that lots, if not all, of us are going to have to work really hard to look after our emotional wellbeing in the coming weeks

To summarise here are our top tips:

• If you feel you are focusing on your hair loss because you have more time to think, try and change the focus of your attention to things that can boost your self-esteem. For example hobbies, interests, exercise, online courses. Don’t expect to just be able to do this. You will have to keep bringing your focus back to what you are doing. But persevere.
• If you seem to be having the same negative thoughts over and over, write them down. Try and be objective and see if there are alternative ways of thinking, maybe ask a friend or family member.
• If you are worried people will notice your hair loss, perhaps make a plan as to how you will take control of the situation and respond in a positive and empowering way.
• Value kindness and compassion. If anyone can respond in a way that is not kind or compassionate then do you need to spend time thinking them?
• Problem solve – is there another way you could manage your hair loss to reduce your anxiety?
• Speak to people who ‘get it’. Our private Facebook group is a safe space to chat to others who are affected by alopecia. It’s a supportive place to get support and share ideas on managing alopecia.

Remember – adversity can bring about personal growth. The inner strength you develop can help you to learn new ways of dealing with problems and new ways of looking at the world. Although things are tough right now, remember, you are building resilience.

If you are really struggling with your mood at the moment, please be sure to access support. You can find helpline numbers and websites here. You are not alone, your physical support network may not be around but no one has gone away.