Vulnerability

Recently, I did something that exposed me on a vulnerable level to my work colleagues. I took an emotional risk!  I doubted and questioned myself several times before I posted a bald picture of myself on our internal company Facebook group.

Each day there is a post recognizing the day.  On October 14, it was Be Bald and Free Day!  In the caption, the request to staff was “I know there are some proudly bald people out there! Post pics if you’d like!”

I seen the poster at the water cooler and seen the post on the internal Facebook page.  I pondered if I wanted to expose myself to work colleagues that may not know that I am bald.  Of course, there are a few staff that know that I have Alopecia. They get to experience my random wig style changes but there are a large number that are not aware.

Why would I want to share this with colleagues at the workplace? I didn’t want my colleagues to think I was looking for pity.  Two things kept popping into my mind, it is away to educate more people about Alopecia, and it is a reminder to staff that being vulnerable is acceptable.  Often, I think we don’t give others around us the space to be their true selves.  Taking an emotional risk especially at the workplace seems uncertain and scary!

I have to say I was relieved to see some of my supporters giving the thumbs up and heart emoji on the post, I knew I had support if I needed it.

Just maybe I educated one person that day about Alopecia or made one person feel less alone in their vulnerability. A small positive impact is all that matters.

Be proud of who you are!

Finding Perspective

Over the past month, our worlds have been turned upside down. It’s really hard to understand how a virus can take over the world, it seems surreal.  We have in the past weeks started to use phrases like social distancing, flattening the curve, high risk and compromised immune systems in our everyday conversations.

We have been asked to stay home, our children are no longer in school, we may have lost our jobs or are seeing our business or our friends’ business be impacted. Going for groceries has become something we don’t recognize there are staff wiping down carts, glass protectors, warnings of only one customer’s groceries on the counter and the list goes on. It is indeed a crazy world we are living in right now.  There is no right or wrong way to feel about it.

For me, having Alopecia has helped me find some perspective in challenging situations.  I think back to when I lost my hair. It was stressful, my world was upside down and it didn’t feel like life was fair.  Life seems pretty unfamiliar right now and may be creating stress and uncertainty for many.  These are the things that helped me find perspective:

1. Family – There is nothing more important than family whether it is your immediate family, extended family, friend family or co-worker family.  Family is that support system that will help to get you through the uncertain times.
2. Making a choice – We may not be able to control what is coming at us but we can control how we react to it.  We make that choice and the gives use control over the situation.  I could not control that my immune system decided to attack my hair follicles, but I could control how I dealt with the that.  I felt empowered once I made the choice to shave my head and wear wigs. I was now in control.  Even with all the crazy stuff going on with Covid-19, if we choose to stay home and make safe decisions we are making that decision and we are now in control of our choices.   Realizing you make the choice and have the control is very empowering.
3. Embracing Change – Accepting that things will change and what was once normal is now in the past.  We need to be able to adjust to the new normal and try not to dwell on what once was and embrace the changes that will be coming. Again, we have a choice and how we react to the changes. If I choose to feel sorry for myself because I lost my hair, I’m making a decision to not move forward and embrace what has changed.  Don’t get me wrong, I’d love to have my long hair back but I know that I can’t control that but I can embrace the change that happened to me. We are going to face changes ahead because of Covid-19 there is no doubt, we can resist or we can embrace the changes. If you find the positive in the change, it will help you embrace it!
4. Having Gratitude – Being thankful for what I had rather than what I didn’t have. I think this is the one of the biggest things that helped me accept and embrace Alopecia.  Yes, I have no hair but I have so much to be thankful for. We can all find something to be thankful for each day if we look hard enough.
5. Educating myself – Learning about Alopecia helped me understand and also helped me educate others.  With Covid-19, the more we learn the better equipped we will be to understand the risks and make informed choices.
6. Being Respectful – Being respectful of myself and others. Understanding the impact that respect has on the results of our day to day actions.  No one or no situation will be perfect but if we can respect ourselves we can make positive choices.  We need to respect what is going on in the world today, we need to follow the guidance of our leaders and support their directions by showing respect for ourselves and others around us.
7.  Happiness – Find things that make you happy, look for ways to reduce stress whether that is going for a walk, dancing in the kitchen or watching a movie.  Take your mind off the stressors. Do what makes you happy.

These are just small things that help me through a difficult situation.  There are always going to be challenges in life but if you can find ways to help you find perspective you can maneuver through the challenges ahead.

The picture I included encompasses all the points above. I was with family (a hike with my husband and son), making a choice to find an activity we could do that would allow social distancing, embracing the change in our weekend plans of not having scheduled activities, being thankful for the beautiful day, educating ourselves about the Big Muddy, being respectful of our bodies in getting exercise and fresh air and finding something to make us happy!!

 

 

 

CEO, My Life

A dear friend and business associate of mine shared a story with me that made me think a lot about life. Morale of the story – Be the CEO of your life, don’t let others control your decisions.

I know first hand that having Alopecia is mentally exhausting.  Trying to come to grips with losing your hair, researching the root cause, treatment plans, deciding how you want to move forward, etc, etc.  The thing to remember is that as the CEO of  your life, you get to make the decisions.  Don’t let other people and society influence your decisions.  You decide!!  Once you change your mind-set from reacting to understanding then it becomes your decision on how you want to move forward. Don’t get me wrong, it is really easy to get caught up in the “why me” phase and its OK to be stuck there for a while or even go back from time to time. Eventually though you need to make a decision and you need to own that decision. Be your own CEO!

If you want to wear the same wig for the next 30 years,  do it! If you want to change your wig to match your current mood, then do that (this is me!) If you want to try steroid therapy or light therapy, give it a try.  Or if you feel comfortable going bald or wearing scarfs that’s good too.  Just be authentic, own the decision.

The reason you have Alopecia is because your hair follicles are being attacked by your immune system. You did not ask for this to happened but it did and now you get to own the decision of how you deal with it!

My daughter did a presentation at school about Alopecia and she made these cool props to explain what happens.

In the unhealthy follicle you will notice that the blood vessel is detached and enzymes are attacking thus causing the hair to fall out.

In the healthy follicle, the blood vessels are attached and there are no enzymes attacking.

I owned a decision this past weekend to go bald in an inspirational photo shoot at my gym. It wasn’t an easy decision and trust me there was a lot of emotion involved.  I made a major CEO decision for me!

It takes courage to own who you are but it’s a great feeling once you make that decision.

Keep Smiling,

Shannon

CEO, My Life!

#baldbrillance #alopecia #baldisbeautiful #beyoutifulbeast

Obstacles

An obstacle is something that blocks your way or prevents you from doing something. An obstacle might actually hinder you from making progress forward. Alopecia Areata (AA) may be your obstacle. Don’t let it be the obstacle that prevents you from doing what you want to.

A common question that AA suffers have when they are first diagnosed is, “How will alopecia affect my life?” AA will affect your life there is no doubt about it. You and only you can decide in what way it will affect your life. Will you let it be your obstacle?

AA is not life threatening, it is not painful (although some of the treatments can be), it is not contagious and generally you have a fairly healthy life otherwise. The thing is we cannot let it be that obstacle that interferes with us doing thing like playing sports or exercising, working, volunteering, raising our families, or whatever it may be. Sometimes, it might not be easy but accepting that alopecia doesn’t define who you are will help you overcome the obstacle it can be. From an emotional perceptive, alopecia can and will at times mess with your self-image, find someone to talk too who is facing a similar problem or even talk to a counselor, feel free to message me.

Every day, I’m faced with a situation that is directly related to alopecia. Whether it is going to the gym and having people wonder what is wrong with me, going for a massage and having to explain it to the massage therapist, going to the dentist and having my wig almost slide off my head, having my children’s friends over and realizing I’m not wearing a wig, taking something out of the oven and almost melting my wig to my forehead or having to hold my wig down in the wind as I walk to a meeting. Alopecia could be an obstacle that prevents me from doing these things but I choose not to let it be that obstacle. Some days, I am done with it and just want to be the normal mom or co-worker with the cute hair cut not worried about how windy it is outside but it’s not an option for me right now so I have to make a positive decision to move forward.

A few years ago, my family and some friends went to Puerto Vallarta for a vacation. I was in the ocean playing around in the waves, when I got pushed over by a big wave; losing the bandana I was wearing to cover my bald head. I’m watching my bandana swirl around not able to grab it, finally my friend is able to grab it and hands it back to me. Did other people notice – most definitely, was it embarrassing – for a few minutes, was it the end of the world – absolutely not, did it provide our group with a good laugh – for sure. I could have allowed AA to be an obstacle and not have gone in the ocean that day but I didn’t and I had a great time.

The more you overcome an obstacle the stronger you will become. Every day, alopecia will get easier and you will become stronger.

Keep smiling,

Shannon 🙂

Surprise!

Well, I have to say the element of SURPRISE can catch a person off guard.

I was watching friend’s children compete at a local high school gym. It was a large event, with 200 plus people watching. To my surprise, one of their children thought it would be cool to pull off my wig! If I remember correctly, he made the following comment, “the one thing I do know is you are wearing a wig”. Before I could even react he had grabbed my wig. I was in shock; I fumbled with the wig to get it back on and looked over at his parents and said, “He pulled off my wig”. I could feel my face turning red and my heart was pumping. I did not look around or make eye contact with anyone in the gym. I had to fight back tears. Needless to say, his parents were none too happy with him. I continued to watch the event and once it was over, I left the gym without making eye contact with anyone along the way.

In the boy’s defense, I often joke around with my wig. He and my son will try on my wigs and I will put them on backwards, inside out, etc. to make them laugh. He may not have realized that this was not appropriate behavior in public. Note to self, remind my son’s friends that it is NOT COOL to pull of my wig in public!

I’ve been thinking about the event for the past few days. I certainly was surprised but I also felt humiliated. I’m very open about wearing a wig. I’ve had to chase my wig down the street on occasion and that did not bother me. So, why did I feel so exposed? It dawned on me that my wig is my crutch; it keeps me safe from being different. If it was on my own terms, exposing my bald, patchy head to the masses, I would have been fine with it but not under that circumstance. We all have certain things that we use as our crutch to protect us from the outside world. Removing this crutch needs to be done at our own pace and under the right circumstances. If I would have went to the event with my bald head exposed, I would have been confident about doing it.

If you are an Alopecia suffer and you wear a wig, bandana or scarf that is great. It is normal to have a crutch to support you! Do it with confidence and hopefully you don’t get any unwanted surprises!

Keep smiling,
Shannon

Define Yourself

Hello,

I have been checking up on the Alopecia research I wrote about in my last blog but at this time have nothing new to report. I will continue to check in on the research and keep you up to date. For the time being, we will have to embrace Alopecia and find ways to cope with the disease! 🙂

I have been asked a number of times, why do you wear wigs, why don’t you just go bald? For me, the reason I wear wigs is not to disguise my Alopecia. I’m very open with the fact that I have Alopecia. I think its just easier and makes me feel more confident working in a business environment. I treat wigs as an accessory to my day. I change it up from long to short, to curly to straight, to different colors depending on my mood. Sometimes, I even change my wig during the day. Over the years, I have grown to LOVE my bald head; I just find it a lot more work to keep my scalp cleanly shaved. At the gym, I wear a bandana to cover my patchy spots. Also, I live in SASKATCHEWAN, CANADA and the wig protects my head from the elements! This is not to say, I won’t ever go bald in public. I am more comfortable with my baldness now than in the past.

It is a personal choice if you decide to wear a wig, a scarf or just go bald. You have to make the decision that is best for you and that you feel confident. Do not let others make that decision for you. I know there is a lot a pressure from society to look a certain way and being bald may seem like it does not fit into the norms. Confidence does fit into society’s pressures and if you can own your decision to wear a wig, a scarf or go bald you will fit. There is nothing more beautiful than a person who is confident in their own skin. Own your decision, define yourself!! Your definition of yourself may change as you become more confident with Alopecia. There is nothing wrong with being private and disguising your Alopecia if this is what makes you feel confident.

I wear wigs with confidence. I have had a number of those awkward; you are in my bubble situations, where people are way to close examining my new hair cut or color. Fooled them!! It was so funny one day, I was just leaving the salon with my daughter and one of the stylists came running up to me. He was gushing over my great haircut, asking me to turn around so he could see the back. I totally surprised him, when I lifted my wig off my head and said he could try it on. He was also bald! 🙂

Shout out to a great support group in the US called Bald Girls Do Lunch. They are launching an amazing project call “Real Women with Alopecia”. If you are an Alopecia suffers and are going to be in the Los Angeles area on March 20 and 21st, check out this great project, http://bitly.com/BGPhotoshootLA.

Keep smiling,

Shannon

Appearance is Everything

Sorry for my long absence. Life has been busy.

I’m super excited to report great news in the world of Alopecia Areata. A study in the United States has identified the immune cells responsible for Alopecia. A drug has been developed and approved by the FDA. Clinical trials are underway and there have been positive results. If the results continue and the drug is proven to be safe, this could change everything for Alopecia suffers. Fingers crossed. Below is a link to the news release regarding the approval of the drug:

http://newsroom.cumc.columbia.edu/blog/2014/08/17/fda-approved-drug-restores-hair-patients-alopecia-areata/

When I was reading the article, one thing that really stuck out to me was the statement “alopecia areata is too often dismissed as simply an appearance-altering disease” (newsroom.cumc.columbia.edu), this is so TRUE. I cannot tell you how many times, I have been told by medical professionals that Alopecia only affects your appearance; it has no affect on your overall health. I would guess a large number of Alopecia suffers would disagree, it affects your entire life and can impact on your health in so many ways. I have chosen to approach alopecia with a very positive attitude but it is not always easy. Alopecia is stressful. Stress affects our bodies and our health.

Society values appearances!! The “Appearance” industry is huge from gym memberships, to cosmetics, to hair products, to weight loss programs, to fashion, etc., etc. Posting “selfies”, getting likes and comments about how wonderful you look validates the importance of your appearance. Having bald spots, thinning or no hair, no eye brows, etc. really does not fit into a society were appearances are valued.

I do my best to not let Alopecia interfere in my everyday life but it still does!! The majority of the time I wear wigs when I’m in public. Let me tell, I don’t wear wigs because they are just so cute and comfortable! I wear wigs because of the importance society puts on appearance. Sometimes, I have to wonder if the wig is really helping or hindering my appearance. I can have the nicest wig on and get a picture taken and it looks like a small rodent is taking a nap on my head! When there is a gail force wind, I can be seen chasing that small rodent down the street. Or just recently, I fell gracefully crossing a busy intersection and had the pleasure of my wig sliding well over my eyes. The gentleman that asked me if I was ok was rather shocked as I looked up and pulled my wig back into place. So it is very refreshing to hear a medical professional validate that alopecia is much more than an appearance-altering disease!

Keep on Smiling!

Shannon

Bald Reality

How do you know if you have Alopecia Areata? Generally, the first symptom is that you will notice a small bald patch or patches. It is typically a round or oval spot that is completely bald and feels smooth. When I first noticed that I had a bald spot, I thought it was the result of always wearing ponytails and my hair breaking off. Soon the one bald spot was followed by other spots.

Bald Patches

If you think, you have Alopecia Areata, it is best to visit your doctor. He or she, may refer you to a dermatologist for further examination. The dermatologist will most likely be able to determine if it is Alopecia just from visually examining the spots and going through a medical history with you. The dermatologist may pull at the hair that is close to the bald spot to see if it comes out easily and examine the hair strands. They may send you for blood work to rule out other possibilities and verify that it is Alopecia. Don’t be scared, I remember when I went for the blood work and I thought for sure something really awful was wrong with me. They took a lot of blood much more than the normal set of labs. In some cases, the dermatologist may perform a biopsy of one of the bald spots. Once the dermatologist verifies that it is Alopecia, they will suggest some treatment options.

It is scary and stressful when you first determine you have bald patches. Alopecia is not as scary as it may seem when you are first diagnosed. You may be able to cover your bald spots, you may respond great to the treatment plans, your hair might come back on its own and at the worst case scenario you are bald. You can decide to wear wigs, scarfs, bandana or just go bald. I’m not going to lie to you and tell you having Alopecia is not stressful. However, it is important to recognize the reality of Alopecia. It may be life changing but it is not life threatening.

Now for some humour.

One night at our ladies ringette game, I had hung my wig up and put on my bandana for under my helment. A fellow player comes around the corner into the dress room and lets out a scream. We are all startled and then she proceeds to tell us she could see some hair hanging from a hook and her first thought was that someone had hung themselves in the dressing room and no one was doing anything about it. It was just my wig!! “Oh, Lois.” The team had a good laugh.

Choose to laugh,
Shannon

Why me?

Hello,

Why do you have Alopecia and not your sibling or your parents? Why does your brother have thick, curly, beautiful hair and you have Alopecia? Why me?? I have asked myself this question many times.

It seems that there is not a real clear answer to the question; however there is evidence that genetics does play a role. Genetics may predispose you to the disease meaning that you are more susceptible to get Alopecia. You may however have the genes and never experience Alopecia. Alopecia can occur after some type of stressor or trigger in your environment which can be anything from a virus to a stressful event. This is why sometimes health care workers will tell you it is stress related.

It is possible that alopecia can be inherited but it does not necessarily mean that if you have it, one of your parents has it or that you will give it to your children. And Alopecia is not contagious!! I had a good chuckle one day at the gym; I overheard two ladies talking and wondering if I was contagious. At first, I was mad and upset but realized it’s just the ingorance of not understanding.

The good news is Alopecia is not life threatening!! Yes, it can be life changing as it affects your appearance and the way people react to you. However, you have to remember the big picture and choose to approach it with a positive attitude. 

Now for some humour, one summer a group of friends went on a golfing weekend. We decided to go water sliding after golf. I was wearing a bandana as I generally do when I’m doing water sports. I headed down the slide and to my surprise there were three sections where the was a drop into a pool of swirling water. I hit the first drop into the swirling water and my bandana came off. I quickly stand up in the swirling water and I’m trying to grab it but it keeps getting away on me. I feel like a cat trying to catch a fish.  I would just about have the bandana and then the water would swirl and I would miss it. Too make matters worse; I look over to see three boys looking down watching me, pointing and laughing hysterically.  I decide I would dive at the bandana, which maybe was not the best idea as the extra water splash gives the bandana enough momentum to go to the next section of the slide. So after it I go and eventually I did catch up to the bandana and managed to get it back on my head before reaching the bottom.  I spent the rest of the day on the lazy river, floating on a tub.  I had only been wearing wigs for a year or so when this happened, so needless to say, it was rather stressful for me at the time. I did however; choose to laugh about it with my friends that evening.

Choose to Laugh,

Shannon