Depending on how obvious your hair loss is, people may feel shy and awkward about approaching you. It may be the first time they have met anyone who has patchy hair or who doesn’t have any head hair, eyebrows or eyelashes. They may not have heard about alopecia and in some situations may think that you have been having chemotherapy for cancer. Below are two examples of people’s reactions to someone with alopecia universalis who was comfortable enough with their alopecia to go out without a wig.

Jayne’s story:

Jayne was out shopping with friends. She was not wearing anything covering her head and had noticed a number of people staring or double taking (as usual) as she wandered round the shops. Jayne had stopped to look at a top in a clothes shop when a stranger approached her and tapped her on the shoulder. She turned around to find a woman in her mid twenties, looking slightly awkward. “I hope you don’t mind me asking but I was wondering how you got your head so smooth” she said. Jayne noticed that the stranger had shaved off her hair. Jayne found the situation awkward but decided that telling the truth was going to be easiest. “My hair fell out” she replied. There was a moment of awkwardness, then the stranger apologised and walked away.

Jack’s story:

Jack was at home with his parents. His parents had gone out and asked him to stay in as they were having some work done on their house. Jack had alopecia totalis and had a completely smooth bald head. The builder arrived and got on with the job. He seemed like a nice guy and made an effort to chat with Jack. A couple of hours later, the builder came into the kitchen to make a cup of tea. After making some chit chat he said “I hope you don’t mind me saying but my wife is suffering from cancer. I know it’s very difficult, but you’ll get through it”. Jack was a bit taken aback but explained to the builder that he didn’t have cancer, but a condition called alopecia. The builder felt awkward having made a wrong assumption. He had never heard of alopecia and felt a bit of a fool, but said he was glad that Jack didn’t have cancer.

When situations like the ones above arise, there are things that you should bear in mind. A lot of people won’t have heard of alopecia or may not be aware that it can result in total hair loss. It can be good to have a quick and simple explanation of what alopecia is that you are happy with. An example is ‘I have alopecia, it’s a condition that causes hair loss, from patchy (like mine) to total hair loss (like mine)’

It is helpful if you learn to manage people’s reactions. This can take time and while you may be finding it very hard at the moment, it will get easier. One skill you can learn which can help, is that of assertiveness. If you are not assertive enough, you may find it hard to communicate with new people and if you are too assertive people may feel you are being a bit aggressive.

By being assertive when you meet new people you will help to put them at their ease. They will know, almost by instinct, that they haven’t annoyed you with their comments, (as long as that is the case!) and know that they are getting an honest and friendly response from you. Handled well, you will both leave the exchange feeling better for it.

Support groups:

A great way to meet new people, who understand and can help you with your alopecia journey is to join your local support group. Find your nearest group here.