The Mental Impact of Alopecia – Emotional Support Guide

Approximately 147 million people in the world suffer from a form of alopecia, and while this is only a small percentage of the human population – it’s still a lot of people.

In many ways, alopecia is a disregarded illness. Many people only see it as losing your hair, and they don’t look further to discover what else it means.

There are plenty of emotional effects to losing your hair, and it isn’t a condition that gives you fair warning – it comes very suddenly and unexpectedly.

While there are plenty of physical symptoms, it is essential to remember the mental impact that a condition like this can have. We are often too quick to brush aside a person’s distress, tell them to get over it, and move on.

This guide will take you through a little more about what alopecia is, but also acts as an emotional support guide for those who are experiencing it, whether you are an adult or a child. Alopecia is not something I have experienced personally, but I do have close friends that suffer from it, and I have drawn many of the notions here from them.

It’s not as simple as all of your hair falling out because alopecia is actually an autoimmune condition that is classed as a chronic inflammatory disease. It tricks your immune system into seeing your hair follicles as foreign bodies, causing it to attack them and your hair to fall out. It affects men, women, and children of all ages and can vary in terms of severity.

There are three main forms of alopecia, and this is what determines how major your condition is. Alopecia areata refers to general patchiness, and losing partial amounts of hair on your head. Alopecia totalis describes complete hair loss on the head, with no patches left behind. Alopecia universalis is where all hair on the body is lost, including eyebrows and eyelashes, and is the most severe form.

Typically, it is a painless condition, although there are some that experience skin irritation as a result of it. For those who end up losing eyebrows and lashes, there can also be eye discomfort due to dust and debris being able to get in more easily. If you can imagine constantly having grit in your eyes, that is what being without eyelashes can be like as they are there to prevent the eyelid from turning inwards. Those with alopecia may also experience weak fingernails.

What causes it has been the topic of debate for decades, but at this point in time it is generally agreed that it is a mixture of genetics and environment. Your genetics can make you more susceptible to the conditions, and things like severe stress or depression can trigger the condition to show itself.

Why the hair follicles are attacked by the immune system is not yet fully understood, but it is thought to be quite a complex process and relationship. Even your personality and coping mechanisms could have an effect on if and when you trigger the onset of the condition.

It is possible for your hair to grow back, although it should be noted that the more extensive the hair loss, the lower the likelihood of it growing back. Even if it does grow back, there is a higher chance of losing it again in the future as a result of stress, trauma, or other triggers. Interestingly, when the hair does grow back, it may be a slightly different colour and have a new texture. For every person, there is a 1.7% chance that they will develop alopecia in their life, and as we have seen, the causes can vary greatly.

Alopecia does not usually cause any physical pain, but it can cause emotional distress and discomfort. It is important to remember that emotional pain is just as valid and important as the physical variety, and it can be as (if not more) debilitating.

The process of losing your hair can be incredibly difficult to come to terms with, especially for those who end up losing their eyebrows and eyelashes as well as the hair on their head. It is devastating for both genders, but studies have shown that women are substantially more affected by hair loss than men – likely due to society seeing bald men as remaining attractive and desirable, while bald women are often viewed as the opposite of that.

In both men and women, hair loss can result in a number of emotional triggers as a way of coping with the change and feelings that come with it. It can even cause mental health conditions like depression and anxiety, something that we look at a little later. Here are some of the emotional responses to alopecia:

It is not uncommon to have feelings of envy and jealousy towards those who do not have alopecia. It can be an alarming and overwhelming emotion at first, but it is important to know that it is normal and part of the process of coming to terms with the condition. However, it is advised that you seek support from a therapist so that these feelings don’t become an unhealthy fixation.

Similarly, an immediate response to developing alopecia can also be to hide away and avoid socialising as much as possible for fear of people seeing you and the way you now look. Even your friends and family can be guilty of insensitivity, and so it can require an adjustment period (as well as good communication with those closest to you) in order to get past this hurdle. Again, help from a therapist can help you to work through these feelings, something we look at further in the support section.

Part of human nature is curiosity, and as much as we wish they wouldn’t, people will stare at things that are different, or abnormal in their eyes. Alopecia can make you feel like the whole world is staring at you because you look different, but there are ways to deal with the (sometimes insensitive) reactions of others.

A lot of the reactions that others have towards alopecia could be solved with better public information about the condition. As it is not something that affects the vast majority of the population, there is not as much educational information out there for people to read and better understand what alopecia entails.

The result of this is that those suffering from it are often assumed to have something like cancer – putting those with alopecia in uncomfortable situations. It is not your job as a sufferer to educate others, but spreading the word and getting more people into learning about what alopecia is and how it affects people is a great way to try and raise awareness, as well as help others to see a lack of hair as having more than one potential cause.

At first, it will likely be difficult to deal with the reactions other people have to your condition and appearance – regardless of the form of alopecia you have. It can be normal to hide it away using hats and hoods, and there is nothing wrong with doing this as your comfort should always come first. However, as time goes by you will find yourself less bothered by any stares or remarks that are made – especially as you rebuild your confidence and begin to embrace yourself.

It is normal for this to take time, and sometimes the best route to take is to find someone (like a therapist or psychiatrist) to help walk you through the feelings you are having as well as show you new and healthy coping mechanisms. It’s a great way to express yourself, and there are even group therapies available so that you can meet others who suffer from alopecia. With this kind of help, it will become easier to deal with the reactions other people have.

For those with chronic diseases like alopecia, it is more common for mental health conditions like depression and anxiety to develop, and there have been a number of studies to show that this is the case. There are plenty of factors that can trigger these feelings, and a few examples of them can be found below:

These can start off as small issues and then escalate into larger ones, snowballing into feelings of depression and anxiety. In this section, we will look at both depression and anxiety in alopecia sufferers, but we will do so separately – for while they are related, they can have different effects.

Anxiety and stress tend to come as a package deal with alopecia, and it can be complicated because alopecia is often triggered by extreme stress and trauma, with further levels of distress being added as the hair starts to fall out. Similarly, they are more at risk of developing social phobias and feelings of paranoia due to their appearance and the lack of confidence that often comes with it.

The anxiety can be heightened due to the fact that you are no longer conforming to what society sees as physically normal, and this is often what causes social phobias to arise. The paranoia disorders are a rarer occurrence, but also very real, and they often appear alongside regular anxiety and social phobias as a way of enhancing fearful and distressed emotions.

The feelings of depression often come with the realisation that your hair is gone, and the heavy impact that follows. As alopecia puts a lot more weight on your appearance, it can be disheartening to realise that you no longer have hair to style, and that you have to come to terms with the condition. It can feel like you are losing control, and this can be a terrifying and devastating aspect of your life.

Alopecia and the psychological effects that come with it can even be equated to grieving as there is a continued sense of loss for quite some time after the hair falls out. This can increase feelings of depression as you learn to cope and come to terms with the condition. The process can take time, and it is often recommended to seek support from a therapist – something we explore in more detail later.

If you feel that you may be starting to feel depressed, or are worried about someone close to you, it is important to recognise the symptoms. They can appear gradually over a period of time or quite suddenly, there aren’t any set rules with depression (as with many mental health conditions). Here are the emotional symptoms you should be looking out for:

Here are some of the behaviours you might see or experience if you are suffering from depression:

If you, or someone you know, have been experiencing any of these symptoms every day for two weeks or longer, it is best to make an appointment with your GP to get checked over and see what they think.

It is not always easy to overcome the emotional impact of alopecia, but there are some steps you can take to try and overcome it. We do go into a little more detail about it in the support section, but finding a good therapist or counsellor is often the first step you should take. That way, you will be able to express the way you feel freely and unjudged, as well as try to learn new and healthy coping mechanisms so that you can come to terms with it.

Equally, it is important that you try not to shut yourself away from the world once your hair starts to fall out. It’s alright to be upset about alopecia, but you can’t let it run your life and overtake everything. At first, it will be an emotional and terrifying experience, but the more you do it, the better you will feel. You need to keep seeing your friends and family, doing your food shopping, and living your life as normal.

Many people with alopecia are subject to ridicule either at home, their workplace, or when with friends. Of course, it can be playful at times, but this does not mean that your feelings are invalid. It’s ok to tell those around you how they feel, and if they keep up with the jokes and comments, you should strongly consider cutting them out of your life.

As time goes by, it does get easier to cope with the emotional impact, and if you have developed any mental health conditions as a result, these will get easier to manage as well. It takes some time, patience, and determination, but it is possible to overcome it all and learn how to deal with the effects.

Hair loss through alopecia can also cause people to feel embarrassed and ashamed of themselves because they no longer look the way they used to. In fact, studies done on men who suffer from alopecia showed that 75% of them felt less confident after losing their hair – especially when interacting with men or women that they have a romantic interest in.

60% of men with alopecia who are bald as a result have been teased for it at some point. We often forget to take the feelings of men into account, and they have emotions just like anyone else, and they can be affected by the words of others. However, as a little pick me up to the bald men reading this, did you know that bald men are actually perceived as being more intelligent than those with hair?

All things aside, the main point is that alopecia does contribute to lower self-esteem, self-worth, and a total lack of confidence in both men and women alike – something we have touched on a few times earlier in this guide. As we have said before, it can be a really difficult condition to cope with, but the feelings of hopelessness and unworthiness will not last forever.

Each form of alopecia comes with its own insecurities. The wind blowing can make you warier of any bald patches that you have tried to hide on your head, losing all of your hair can mean that you start to rely more on hats and caps to cover it up and prevent people from staring. Hoods are also quite popular among those that have lost eyelashes and eyebrows because it covers the face a little more as well.

It can also leave you feeling less attractive and as if you have lost something that makes you who you are – which does tie in with the depression and anxiety that we talked about earlier. Our hair is seen as a central part of our physical appearance for both men and women, so losing it can leave you feeling less confident and really crush your self-esteem.

If you have lost your eyebrows and lashes, it can leave your face looking incredibly different because these features help to define us. It can be quite shocking to look at yourself in the mirror at first, and may even cause some anxiety with regards to your identity. Understandably, this aspect can really lower feelings of confidence and self-worth.

Despite all of this, there are a few ways you can try to regain your confidence and build up your self-esteem so that you feel better in yourself, and more able to go out without fear. Take a look at our little list:

Regaining confidence and self-esteem is not easy, and it certainly can’t be done quickly, but it is important to start the process as soon as possible. Taking the time to push yourself and care for yourself will do wonders for your emotional and mental state.

It can easily be argued that alopecia in children is more difficult to cope with than adults. When you are young, there is a lot more pressure to fit in with those around you and conform to social norms so that you do not become the target of taunts and teasing. Children are often crueller to each other than adults, especially during the preteen and teen years, and so alopecia can often leave a child right in the centre of a bully’s target.

This links in with lowered confidence and self-esteem, something that children already struggle with on a regular basis. It can be hard to see others with full heads of hair that have been styled nicely or are able to sit freely while they walk around, and looking so different and feeling less attractive than everyone around you can be very damaging for those with no hair.

Similarly, the fear of being judged can be another factor that adds to a lack of confidence, as well as one that causes feelings of anxiety and stress. They may even start to exhibit signs of depression, and so therapy or counselling is often an excellent way to help them get through the experience and start to learn how to cope. You can learn more about the symptoms of depression in one of the above sections.

For children that are aged five or younger, alopecia is often a lot easier to deal with, and they may not experience as much emotional distress. This is because they do not pay as much attention to their physical appearance or how they differ from others at this age. Additionally, friends their age are also unlikely to notice it as something unusual, and they may all find it to be an interesting situation, but not much more.

It is those who are between six and 12 (as well as older) that are likely to suffer the most from alopecia. At this point, they have interacted with a wider variety of people, and so they have started to notice the ways in which they are different from others as well as become more conscious of their physical appearance. This is where problems with confidence and self-esteem can start, and it can be more difficult for them to accept – hence the need for early intervention with counselling.

Many children and young people with alopecia have stated that while other kids can be awful and quite harsh, it is something that you get used to and learn to embrace over time, and that adults also tend to be very kind and understanding. As they have grown up (both physically and mentally), they have found it becomes a normal part of their life, and that while there are ups and downs, they have all come to terms with it and accepted it as part of who they are.

While alopecia remains an uncommon condition in the big scheme of things, there is actually plenty of support out there for it. One of the best forms is therapy, and there are a number of them out there. You can usually get a referral for a therapist through your doctor, and while this can take a little while you will usually get a trusted and qualified professional that has been endorsed by your health centre. You can also look for them yourself and refer yourself to the practice.

Sometimes, the waiting list is longer if you do it this way, but it is ideal for those that would prefer not to go through their doctor. Once there, you can decide between one on one therapy and group therapy, whichever one is going to be most effective for you. Often, being in a group can be very beneficial as you get to hear from and speak with people who are experiencing the same thing as you.

Additionally, you can find loads of online support resources, brochures, and fundraising events – and there is more information on these and where you can find them in the next section. These tend to be very easy to access, and there are also a number of online forums where you can speak with people who are going through the same thing as you. There could be more support out there, but considering that this condition is relatively uncommon, it’s a reasonably wide amount.

There are medical treatments out there for alopecia, and while there is no cure some of them have been able to help a little. Interestingly, there are more treatments available for men than women, and we will take a little look at some of the options in this section.

First, it is important to note that there are no reliable treatments available for children under 16. This is likely because they are growing so quickly, as well as due to them hitting puberty and all the associated changes that come with it. There are treatments out there, but they may not be very effective.

Generally speaking, DPCP and corticosteroids are used as treatment for alopecia, and the results often vary according to the severity of the condition (totalis and universalis tend to be less responsive to the treatments). While there is success from this treatment, there is also a high rate of relapse once you finish the course, and so it may need to be taken very regularly. This treatment can also cause further emotional distress when it stops working, and your hair begins to fall out again, which can make you wonder if it is worth the pain. Yes, there is regrowth, but it is not reliable.

The drug ruxolitinib has proven very effective in those suffering from alopecia, with full hair growth within five months. It works by preventing the immune system from attacking the hair follicles, giving them time to repair and restore themselves. However, the long-term effects have not been explored very thoroughly yet.

Stem cell research is the most promising so far, as it is for most medical conditions, and while it is still in the early trial stages of treatment, the results are looking incredibly promising so far. The official research began in 2015, so there may be a little while to wait until we see anything mainstream, but it should be worth it.

There are loads of resources out there, and to help you find the one that is going to be right for you, we have gathered the top sites in the UK and USA for you to use when you need a little emotional support. You will also be able to use these websites to find fundraisers and support groups that you can join (both online and offline), and there is also support for children available.

UK Resources
Alopecia UK: https://www.alopecia.org.uk/
BAD: http://www.bad.org.uk/for-the-public/patient-information-leaflets/alopecia-areata/?showmore=1#.W7YO_GhKhPY
Simply Wigs: https://www.simplywigs.co.uk/blog/alopecia-support-groups/
Health Talk: http://www.healthtalk.org/young-peoples-experiences/alopecia/sources-information-and-support-about-alopecia

USA Resources
NAAF: https://www.naaf.org/
Alopecia Support: http://www.alopeciasupport.org/
Children’s Alopecia Project: https://www.childrensalopeciaproject.org/
Headcovers: https://www.headcovers.com/resources/hair-loss/alopecia

To Conclude

Hopefully, this has helped you to learn new ways to cope with and understand your diagnosis, as well as support the people you know that already have it. Whether you are a sufferer or just want to understand those who suffer, this guide has everything you need to get started – including a list of excellent resources for you to go through.

It is a difficult condition, especially as it can alter your appearance so drastically, and it will take time to come to terms with and regain your confidence. With the help of friends, family, and a therapist, you will learn how to cope in a healthy manner and become comfortable with your condition. Alopecia doesn’t have to mean the end of your social or normal life, and it will become a regular part of things.

What did you think of our emotional support guide for alopecia? Were the topics and ideas inside useful, or are there other aspects that you would have liked to see included? Your views are important to us, and we love hearing from you, so leave us a comment below.