Are you getting better?

I was in a DIY store last week with my Mum. I was looking for bathroom sealant in case you are interested which I’m sure you’re not.  Walking down the store, a lady approaches me and asks “Are you getting better?”

Now over the past 4 years of being a bald or patchy headed woman, I’m used to getting comments about my ‘illness’. It doesn’t happen as often as a patchy headed person as it did when I was completely bald and lacking eyebrows. I suppose, for many, the only explanation* for a bald woman with no eyebrows is that she is undergoing chemotherapy and battling cancer. So I can understand the mistake. It highlights the need for greater awareness of alopecia so people don’t automatically assume that a person without hair is having chemo.

(*the fact that there even needs to be an explanation of why a woman is bald is a whole other blog post!)

I’ve had the following conversations over the years, which I share with you now to give you a little insight into my life (I’m sure those of you reading this who have alopecia can relate to one or two of these):

In clothes shop:

Stranger 1 (touches my arm) : “This was me. This time last year.”

Me: “Sorry, what do you mean?”

Stranger 1: “Chemotherapy. Breast cancer”.

Me: “I’m not having chemotherapy. I don’t have cancer”.

Stranger 1: “I don’t understand. Why haven’t you got any hair?”

Me: “I have alopecia areata. It’s an autoimmune condition which means my body attacks hair follicles and my hair falls out”

Stranger 1: “Oh, thank goodness it’s nothing worse. You must be so grateful”

End of conversation. Me left thinking, I was just wanting to try on some clothes, why do I now feel awkward and crappy?

In a pub:

Stranger 2: “You’re so brave”.

Me: “Why, is there something I don’t know about the house gin!?”

Stranger 2: “No, I mean battling cancer.”

Me: “I don’t have cancer”

Stranger 2: “Oh”. Walks off.

Me to barman. “Can you make that a double gin please?”

In McDonalds (don’t judge me):

Stranger 3: “My mum had cancer”

Me: “I’m sorry to hear that”

Stranger 3: “I think you’re amazing”.

Me: “I don’t have cancer”.

Stranger 3: “I think people with cancer are so inspirational and brave. You know what I’m saying?”

Me: “Yes, I agree. But I don’t have cancer.”

Stranger 3: “I think you look great in your headscarf. Don’t be ashamed. Be fierce. You can beat it.”

Me: (Big sigh) “Erm, thanks”

End of conversation.

There are other examples but I think this gives you the gist of the sort of conversations I’ve experienced and encountered over the past few years.

I’ve only had one person approach me in the street and ask me “Excuse me, I hope you don’t mind me asking, do you have alopecia?” I wanted to kiss her! “YES I DO!!” Turned out she’d had a bald patch for a while and had never spoken to another person about it.

Now it’s a sensitive issue the whole ‘alopecia mistaken for cancer’ one. I’m sure some of you may even be thinking I should leave it alone. It’s a bit of a tricky subject to tackle to be honest but I will try. People with alopecia will continue to be mistaken for people with cancer until alopecia becomes something that the general public is more aware of (Alopecia UK and other groups are working on that!). The assumption that it’s cancer can leave the person with alopecia feeling guilty for struggling with their hair loss and it comes back to the line that I hate and the one that can hurt those with alopecia the most: “It’s only hair”. I’ve even heard people with alopecia tell me that “we should be grateful we haven’t got cancer”.

Here’s the thing: I AM grateful I don’t have cancer. Extremely grateful. It’s probably something I have considered much more than the average person. It’s the repeatedly being mistaken for someone with cancer that really hammers home how wonderful it is to not have cancer. So aware am I of cancer, I hope and pray it is something that I never have to fight. I have nothing but admiration and compassion for those who battle the cruel big “C”. But that’s where it stops.

I’m not grateful I “only have alopecia and not cancer”. I’m not grateful it’s “just my hair and nothing worse”. It’s difficult for me to write those two statements. But they’re not to be read in isolation. I’ve just explained in the paragraph above how incredibly grateful I am that I don’t have cancer and how much admiration I have for those that battle the disease. But how many other health conditions are dismissed by many as a bit of a non-issue owing to the fact that it’s not cancer? “You have severe psoriasis?” “Well at least it’s not cancer”. “You have arthritis?” “Well, thank goodness it’s not cancer”. It just doesn’t happen that way. I believe alopecia is quite unique in that way.

To suggest that men, women and children with alopecia should be grateful that they’ve only lost their hair and have nothing worse, adds a terrific amount of guilt to the feelings of sadness and grief they may be feeling about their hair loss. I completely recognise that many people with alopecia deal with their own hair loss by adopting the “it’s only hair” frame of mind. This can be a way of coping with the sudden change that alopecia brings. But we all need to understand just what a massive psychological impact hair loss can have on an individual. I’m ‘alright’ with my alopecia now. I’ve reached a level of acceptance that many people with alopecia never reach. For some the radical change in their appearance and society’s often negative view of baldness, is enough for them to never embrace or accept their condition.

To suggest “it’s only hair” belittles the year I spent feeling depressed and despairing about my hair loss. It undermines the buckets of tears I shed whilst coming to terms with an unexplained and untreatable condition that changed my physical appearance drastically, to a point where I could not bear to look in a mirror. It makes a mockery of the days when I felt so low that I struggled to even get out of bed.

So how did I respond to the lady in the DIY store when she asked me “Are you getting better?”.

“I’m getting better at responding to people who mistakenly think I have cancer when in fact I have an autoimmune disease called alopecia areata”.

Ok, so I didn’t think of that response. But it would have been pretty cool if I had! 😉

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