10 things we hate about alopecia At Alopecia UK, we want to reflect on the good and the bad when it comes to talking about hair loss. This Alopecia Awareness Month, we have two blogs highlighting the positives and the negatives of alopecia. In this one, we’re focusing on the bad! It can feel like an uninvited guest that won’t leave! We do not invite alopecia into our lives, and this can leave us feeling helpless. Whether it creeps slowly into our lives as with androgenetic alopecia, or appears very suddenly as with alopecia areata, we can all share the feeling of wanting to remove it from our lives but struggling to do that. Those little triggers! We can be having a good day and be feeling positive about our hair loss, and then suddenly there is a shampoo advert with a model running their hands through their thick, glossy locks. Or we see an old photo of ourselves before our hair loss. Or we hear sometime on TV make a poor-taste joke about alopecia. These things can make us grit our teeth! Being told by a medical professional that it’s ‘cosmetic’. Whether it’s NHS Trusts not offering dermatology appointments to those with alopecia or a private insurer declining cover for hair loss treatments (unfortunately both these things are currently happening), it can be hugely painful to hear our medical condition dismissed as a cosmetic issue. It ignores the hundreds of published studies and journal articles that confirm alopecia is a medical condition with a psychological impact, dismissing the toll on mental health that alopecia can have, including an increased risk of experiencing anxiety and depression. The expense! Depending on our choices, wigs can be expensive, especially human-hair wigs which have dramatically increased in cost since the impact of the pandemic. But there are plenty of other costs too – private dermatology appointments, treatments, private mental health services, hats, headwear, lashes, brows, permanent make-up, scalp micropigmentation. Limited treatment options. All anyone wants when facing a new medical problem is to be given a treatment that makes things better. Unfortunately, regardless of the type of alopecia, treatment options are limited and a treatment that works for one person may not work for another. When clinical trials show a new treatment to to be effective, but NICE do not recommend it (as has happened recently for a new treatment for alopecia areata), this can feel extremely unfair, especially if it has received the green light from NICE for other conditions. Unwanted attention. Sometimes we just want to blend into the crowd. Having a visible difference can mean that we receive comments or stares that we otherwise wouldn’t get. This can, at times, be uncomfortable and sometimes downright awkward! Impact on self-esteem. Hair loss can be emotionally distressing and lead to feelings of self-consciousness and reduced self-confidence. Feeling that our appearance deviates from societal norms or beauty standards can have an understandable impact on our self-esteem. The physical impacts that are often overlooked. The emotional impact of alopecia is well understood but there are physical effects that are not often discussed. For those who lose body hair, there can be issues with body temperature regulation. Without eyebrows, exercising can lead to sweat getting into eyes. People without eyelashes are prone to getting things in their eyes, such as grit or flies! Eyes can also be more sensitive to sunlight. There is a plethora of physical issues that many don’t consider. Times when those around you just don’t get it! “Well at least you’ll save a fortune on shampoo” (How much do people spend a year on shampoo to think that we're saving a fortune?!). “Why don’t you just get a hat or a wig to cover it up?” (Ah yes, why didn’t we think of that? Problem solved!) “You should stop stressing about it; it’s just hair” (Right, come back and say that when your hair is falling out!) Everything can feel like a battle. Whether it be getting a GP to listen to us, getting a referral to a dermatologist, the huge waiting times for dermatology appointments, the fight to get a wig, accessing a suitable treatment, or all the above, it can often feel like we have a fight on our hands. Knowing that Alopecia UK advocates to make improvements in these areas can give some comfort but ultimately it is frustrating, and exhausting, to face these challenges. For those facing difficulties, we have some tips on how to Advocate for Yourself here. If you are interested to find our list of more positive aspects, you can find our ’10 things we love about alopecia’ blog here.