Monday, November 9, 2015

Tell Me When You're Having a Bad Hair Day

I haven't written about my Alopecia (hair loss for those who don't know) in forever, but I was inspired to recently after joining a Reddit group on Alopecia and remembering why I don't like the so-called support groups. I do like reading about new research and talking treatment options with others, just not the support suggestions. Recently I found some articles on what not to say to someone with Alopecia. I just sighed. I get that everyone deals with a disease differently and for some people, their Alopecia is a huge cause of anxiety. But I really hate these things! So here are things you are apparently not supposed to say to me (and reasons why it's OK to).

1. I wish I could wear a wig!
I have been told this one before. You know why? Because my hair ON POINT some days. A couple weeks ago Cam's cousin was telling me my hair had so much body and looked like a wig (as a total compliment- it is hard to explain). She was talking about how on Oprah all these people with amazing hair confessed they were wigs. She asked me what my secret was. I died. And then I told her.

Honestly, I don't mind wearing a wig. Maybe it is because I am used it? Kind of how you don't think about that fact that you are wearing shoes, or underwear, or a ring or something. You get used to how it feels and that is "normal" to you. Of course having hair might be easier at times, but that isn't an option for me so it isn't something I generally think about.

2. I'm jealous of how fast it takes you to get ready
You should be. I only have to wash/style my hair every week or so. When my friend got married a few years ago I did my hair the night before and got to chillax the next morning while the other girls scrambled with straighteners and curling irons.

On the other hand, I do have to put on false eyebrows and eyelashes every morning, but I am actually SUPER fast at false eyelashes now. Takes me under a minute. THAT you should be jealous of!

3. It'll grow back, right?
What? Are you my doctor? Because even he doesn't know. I have never once had a person assume my hair would grow back. I have had people ASK if it will, which is a perfectly normal question and I encourage questions so people can learn about Alopecia. No biggie! Ask me anything!

4. My friend tried ______ and his/her hair grew back
I appreciate when a friend tells me about something they have heard of that may help. Of course, 99% of the time I have already heard the theory and then we have an interesting discussion on whether I would like to have my hair grow back or stop eating bread (yes, evil gluten has been pointed at as the culprit in some cases, but man do I love bread...). All I am saying is this really doesn't bother me and really doesn't come up much. Actually, most people who have Alopecian friends (I think I just made myself a race), say their friend's hair growth is completely unpredictable like mine.

5. It's only hair
WTF? Do people have really bitchy friends? That's a weird thing to say to someone. It IS only hair, and I am lucky enough to be able to understand that and be okay with that, but that is not a nice kind of thing to say to anyone who is upset about something (hair or otherwise).

6. Do you have cancer/shave your head?
This is a weird one, but I am trying to include things that people say that are well-meaning and I have gotten this one quite a bit in my life. I just chalk it up to people being curious and I explain Alopecia to them (and then I also kind of wish I could explain that cancer itself doesn't make you lose your hair, but I only have so much time in my life). I just wish instead of assuming what is wrong with me, people would just ask what they are thinking- "why are you bald?". But again, I know they aren't being malicious so I don't take offense to their question.

7. Let me rub your head for good luck!
If you are my friend, go for it. Free head massages! But if this actually worked I would probably be rolling in cash.

If I don't know you, you probably should take an etiquette class.

8. I'm having a bad hair day
I see this one touted a LOT as something to avoid saying around an Alopecian (I am totally making this a word). Let me be clear- YOU ARE TOTALLY ALLOWED TO HAVE BAD HAIR DAYS. And you can tell me about them! And I will laugh at your ugly hair as I stroke my on point wig that I haven't washed in weeks (just kidding).

I don't think my not having hair invalidates your feelings towards your own hair. In fact, some days my wig is being all cray and I too am having a bad hair day. And some days my pants won't do up and I complain to a friend who perhaps weighs more than me. Other times I am sore after a workout and I may commiserate with a friend who broke their leg. My point is, all of our bodies are different and they all have good parts and bad parts and we like to discuss those things with our friends because our friends are supposed to support us, regardless of their own insecurities. I don't think my lack of hair should make you treat me any differently.

I do want to add in here that some people ARE really sensitive about their hair loss, and you as a friend SHOULD know that and be sensitive to that fact that discussing your own hair may upset them. All I am saying is that this rule does not apply to everyone experiencing hair loss.

So here is MY list of what not to say to a person with Alopecia:
1. Anything that is YOUR OWN unsolicited opinion on how he/she should feel/act
2. Anything that tries to invalidate his/her own feelings
3. Anything that is unsupportive/bitchy/mean-spirited etc

Oh wait...that is a list of how all friends should treat each other, regardless of Alopecia or any other disease!

My alopecia is simply a part of who I am after all these years. Like how some people have brown hair, or freckles, or webbed toes- bald is just a description of one facet of me. Thankfully (due to my wonderful family and friends), I am very confident and I am rarely upset over my hair loss. I lean naturally to humour and I can find a lot of good jokes in my baldness, so I rarely am insulted by an innocent comment or joke. I get much more annoyed over well-meaning people trying to box in how to experience alopecia yourself or how to treat people you know with alopecia- to me that goes against rule 1 of my 3 rules up there!


  1. WELL SAID! Sheila

  2. Oh man, #8 made me laugh out loud! Great list! When I was in university I worked with a girl who had no eyelashes or eye brows. It wasn't super obvious, but I assumed she had a hair pulling condition (I'm not sure what it's called, but some people with anxiety pull out their hair). Looking back though, it's likely she had alopecia... She always wore her hair down (wig?). I never asked her about it, but I was always curious!

    1. I think thats called trichlotillomania. That one is probably worse than alopecia because you do it to yourself :\

  3. Thanks Casey! I've only been an Alopecian (I just steal that term from now on!!) for a bit over a year, stumbled upon your blog about a month ago because of your freedom wig review (which convinced me to order one just a couple of weeks ago) - and stayed for all the other stuff you write about. You are absolutely right, Alopecia doesn't define us. I know that I cope better than other people with it, but I do get sad about it some days. I feel that being open with my friends and family about it helps me more than trying to hide it from everyone. If people give me compliments about my hair, I very often say it's a wig. I explain what Alopecia is and feel like I've done my bit to raise awareness. But this completely depends on my mood that day. Some days that comment can bring me close to tears because I had great hair when I had hair - just about a year ago...
    Anyway, I like your blog not because you have Alopecia, but because I like your "waffling"!!xx

    1. Thanks Sandra! So sweet to hear from you!

      Ive had alopecia for 15 years so I am much more used to not having natural hair. I think it gets easier with time, but it sounds like you are doing well, which makes me happy! :)

      Good luck with your freedom wig! let me know if you have any questions

  4. I will never forget when you scared the shit out of Mr Craig when you opened the door of our Roman hotel room completely bald.

  5. I just wanted to say a big thank you for writing! I stumbled across your blog during a manic Googling session following a very recent diagnosis, and feeling very scared and uncertain about what may lie ahead. Hearing from you and seeing your photos has made me feel relieved and less scared as you look totally gorgeous both with your wig and without. I cannot thank you enough xxx

    1. I dont know if you will see this but thank you!! Your comment made my day :). Feel free to email me any time


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