Living with alopecia areata: the support that counts

Alopecia areata does not hurt, is not contagious and is not life-threatening. That is why it is often downplayed: "it's only hair". Those who live with it know it is not like that. Losing your hair, eyebrows or eyelashes, unpredictably, affects your image, your confidence, the way others look at you and the way you look at yourself. In Portugal, it is estimated that about 31,000 people have alopecia areata (Pedrosa et al., 2024).

This article is not about medical treatments (those are in Alopecia areata: what it is and how to recognise it). It is about the rest: the emotional impact, what helps day to day, how to talk to your children, school or work, and when to seek support.

The emotional impact: what studies say

A 2022 systematic review with meta-analysis (van Dalen et al.), which brought together 93 studies, concluded that people with alopecia areata have poorer psychological health than people without the condition:

• Anxiety: in adults, symptoms of anxiety were significantly more common than in controls, with a medium to large effect size.
• Depression: depressive symptoms were also more frequent. In the largest study included, with more than 71,000 people, about 9.5% had a diagnosis of depression.
• Quality of life: the impact measured by the Dermatology Life Quality Index (DLQI) was, on average, moderate, similar to that of other chronic skin conditions.
• Children: there are fewer, smaller studies, with varied results, but some found high rates of anxiety.

Why it weighs so heavily

• Unpredictability: you do not know when the hair will return, or whether it will fall out again. Many people describe living "in suspense".
• Visibility: hair, eyebrows and eyelashes are part of identity and facial expression.
• Lack of control: the condition does not depend on what the person does, which can generate helplessness.
• Other people's comments, often well-meant but misplaced, or the fear of being judged.

The emotional impact does not depend only on the extent: a small patch in a visible area can weigh as much as a larger loss. And feeling affected is not a sign of weakness or vanity.

What helps

Clear information

Understanding what the condition is, that the follicles are not destroyed, that it is not contagious, that it was not caused by anything you did, and that there are treatments, reduces anxiety for many people. Be wary of sources that promise miracle cures: they feed hope and frustration in equal measure.

Regular medical follow-up

Having a regular doctor, regular consultations and follow-up photographs gives a sense of control, makes it possible to act early when relapses occur and to discuss options calmly, including not treating. The doctor should also ask how you are feeling, not just how your hair is.

Psychological support

The review by van Dalen and colleagues recommends that professionals be alert to the psychological impact and refer for support when needed. Cognitive behavioural therapy and other approaches help to cope with anxiety, body image and unpredictability. You can ask your GP for a referral or find a psychologist registered with the Portuguese Psychologists' Association.

Contact with others going through the same

Talking to other people with alopecia areata, in face-to-face or online support groups, helps you feel less alone and swap practical tips. International organisations such as Alopecia UK or the National Alopecia Areata Foundation (USA) have useful materials, also for children and families. Choose groups with a positive tone that do not promote products.

Look after the rest

Sleep, physical activity, close relationships and activities you enjoy do not treat alopecia, but they protect mental health. See How to lower stress without effort.

Camouflage and practical options

There is no right choice: some people prefer to disguise it and others prefer to embrace it. Both are legitimate, and the same person may change their mind over time.

For the scalp

• Change the hairstyle or the parting to cover small patches.
• Hair fibres and coloured sprays to reduce contrast in small patches.
• Headscarves, turbans, caps and hats.
• Wigs and hair prostheses, made of synthetic or natural hair, for extensive loss. It is worth trying them in specialist shops and asking about fixing, maintenance and comfort in hot weather. Some people wear one wig day to day and another for special occasions (Montgomery et al., 2017).
• Shaving your head: some people feel relief in accepting the loss and no longer hiding it.

For eyebrows and eyelashes

• Eyebrow pencils, powders and gel and stencils for shaping.
• Eyebrow micropigmentation: lasts months to years. Choose professionals with good hygiene practices and tell them about the condition. If the condition is active, it may be worth talking to your doctor first.
• False eyelashes and eyeliner to define the eyes.
• Glasses can protect the eyes from dust when eyelashes are missing.

Protect your skin

A scalp without hair is exposed to the sun: use a hat or sunscreen. In winter, protect it from the cold.

Children and adolescents

For parents

• Talk to the child in a simple and honest way, adapted to their age: "your body is getting confused and stopping your hair from growing; it is not your fault and it is not catching".
• Let the child take part in decisions, such as whether or not to wear a cap or wig, and what they want to tell their friends.
• Keep up the routine and the activities the child enjoys. The condition should not define childhood.
• Watch for signs such as withdrawal, refusing to go to school, irritability, sadness, or changes in sleep or appetite.
• Look after yourself: parents also feel distress and guilt, and deserve support.

At school

• Speaking to the form tutor or teacher, with the child's agreement, helps to prevent comments and to manage situations such as wearing a cap in class or PE and swimming.
• Some families prepare, with the child, a short explanation for the class. Knowing what to say gives confidence.
• Bullying should be reported to the school straight away. No child should have to deal with it alone.

Adolescence

It is a stage when appearance weighs heavily. Teenagers may prefer not to talk to their parents and find support among peers or online. Be available without pressuring, and suggest psychological support if you notice distress.

Work, relationships and what to say to others

What to say

You are under no obligation to explain anything to anyone. But having a sentence ready helps to avoid uncomfortable moments. For example: "I have alopecia areata, an autoimmune condition that makes hair fall out. It is not contagious and it is not serious." You can add more or less, depending on the person and the moment.

At work

• Alopecia areata does not limit the ability to work.
• Whether or not to tell people is your decision. Some people prefer to talk to their manager or to close colleagues to avoid questions.
• If you need to miss work for consultations or treatments, you can justify it like any other medical appointment.
• Offensive comments or discrimination in the workplace should not be tolerated and can be reported to human resources.

In relationships

Many people dread the moment of telling a new partner or of taking off the wig. There is no right moment; there is the moment when you feel comfortable. Close relationships are, for many people, an important source of support. Sharing how you feel with someone you trust helps.

Other people's comments

Questions such as "have you tried...?" or "it's the stress" are common. You can answer with a short sentence and change the subject. Those around you can help, by knowing what to say and what to avoid.

When to seek help

Emotional support

If you have thoughts of self-harm or that life is not worth living, seek help immediately: call SNS 24 (808 24 24 24), which offers psychological counselling, or 112 in an emergency. You are not alone.

Medical assessment

Book a consultation if the patches are increasing, if you have lost eyebrows or eyelashes, if you have never been assessed, or if you want to review the treatment options, including the most recent ones for severe forms.

At Luxmed, the hair medicine consultation includes an assessment with trichoscopy, measurement of the extent, follow-up photographs and a plan agreed with you. We also talk about how the condition is affecting your daily life and, when useful, suggest psychological support.

This article is for information only and does not replace a medical or psychological consultation.

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