A year ago my mum shaved her hair in a bid to raise funds for Epilepsy Queensland Inc.
Since then many have asked why I didn’t shave my hair or if I’ll shave it this year. Some have even gone as far as to say that it should’ve been me shaving my hair as I’m the one living with epilepsy and trying to make a change.
In this blog post I’ll hopefully answer everything.
A problem too many people with varying medical conditions, not just epilepsy, face is neglectful care. Doctors that would rather try and treat a patient than refer them onto somebody better suited for their case. Doctors with tunnel vision and their sights set on being the one who “fixed the mystery case” rather than actually caring for the patient. This leads to mistreatment, misdiagnosis and worsening of the patient’s state.
The following content may be triggering for those who are sensitive to topics regarding weight, eating disorders or medication reactions. Please skip until you see ** above a paragraph.
I started my journey with a local general paediatrician and neurologist in Brisbane. Neither did the correct tests to find exactly what kind of epilepsy I have. By not knowing what kind of epilepsy I have they didn’t know which medications are best suited to my condition. Instead of prioritising which medications I should try based on which has been proven to work best with my epilepsy they just gave me whatever they felt like.
At one point I was given a medication that in Australia is used as an anti-epileptic drug but in America it’s used as an appetite suppressant & weight loss medication. While this information wasn’t made aware to me until much later I did quickly find out why. I lost significant weight and fast.
I had appointments with my paediatrician every 3 months and appointments over skype every 6 to 12 months with my neurologist while my paediatrician was present. When I tried to discuss the weight loss with my paediatrician at my first appointment after being put on Topimax I was told it was a good thing. Anybody with half a brain knows that BMI is not accurate but I was told “according to your BMI you were borderline obese to begin with, you could afford to lose a few kilograms.”
They continued to ignore the pleas of myself and my mother as I continued to drastically lose weight until their answer suddenly became that I had an eating disorder. Again, they did no appropriate investigations into this let alone made any attempt to treat the suspected eating disorder. I was left to continue starving as I couldn’t eat anything without vomiting due to the medication. My body naturally became malnourished and I also developed iron anaemia. My body was quickly wasting away. I went from having the body of a promising professional athlete to having minimal muscles and being so weak I could hardly stand without passing out most days. I was what some, at the time, described as “a grey bag of skin and bones”. I don’t feel comfortable using numbers at this point in time but I lost over half of my body weight and was in a danger zone. My paediatrician told me I was 1 kilogram, 2 maximum, away from being admitted and tube fed.
It was denial of how bad my situation truly was that gave me the strength to do anything.
When we finally had the appointment with my neurologist the paediatrician tried to not bring up the subject of weight loss but my mum is my best advocate. She spoke over the top of my paediatrician and told my neurologist what was happening with my weight. Instantly the neurologist told me to get off of it straight away. “It’s definitely the medication. It’s used for appetite suppressant and weight loss in America. Who let it get this far? Why was I not made aware before now?” They weren’t impressed. How the neurologist and paediatrician handled my medication from there was not ideal but that’s a story for another day. I had to see a dietician, was put on a diet plan and had to have weekly weigh ins every Friday morning for close enough to a year after being taken off of that damn awful life destroying medication.
What does this actually very brief summary of my journey to malnutrition have to do with mine or my mums’ hair?
I lost my hair due to malnutrition. I got to that point because I had neglectful doctors but I had those doctors because of my epilepsy. If I didn’t have epilepsy I never would’ve lost my hair. I’ve always loved having long hair and grew up wanting to have hair as long as Repunzel. Epilepsy took so much of my confidence away from me. As I write this post I’m listening to music and I think the song that’s just come on best describes how this time in my life felt for me.
“Forgive me for I have fallen from above, but I never felt so hard to love” – Hard to Love by Stateside.
At this same time it also brought unwanted attention and comments my way instead. I won’t repeat comments made to me as they were very inappropriate and insensitive not only to me but people with other conditions mentioned or referred to.
While 3 friends knew what was happening others did not and for the most part I didn’t allow them to see me in the state that I was in. But when I did allow people of the world to see me I also had to explain to friends and strangers alike why I looked so deathly and was losing my hair. However, I still wasn’t ready to tell these people about my epilepsy so I had to be creative in telling them I was sick but okay without mentioning my condition. This was so hard and uncomfortable for me and others involved.
Epilepsy has already taken my hair.
It’s not an experience I’d like to ever repeat.
My body has been working so hard to recover and to let my hair grow again. To help it along I, someone who loves fashionable hair colours, haven’t touched any regrowth with any dye.
I refuse to let epilepsy take my hair again in any way that I can avoid.
This is why I won’t shave my hair.
But like I’ve already said countless times on this blog and face to face with people, my mum is my biggest and best advocate and willingly shaved her hair for me and anybody else that needed her to do it. She did that for me and now I don’t have to.
What I will do, however, is colour my hair. As already mentioned I’ve loved colouring my hair with fashionable and bright colours. It’s form of self expression for me but it too was taken away with the loss off my hair.
Unfortunately I began to get more and more stuck in the past the more and more my hair came back. The more natural colour that grew the more I became attached to it and the phase of my life that it represented. It wasn’t a healthy fixation. I was scared to partake in a safe and health form of self expression for no rational reason. I was simply attached to a time in my life that wasn’t healthy to being with. Since that time in my life I, like my hair, have grown. I’m no longer on that medication or under that medical team. I’m under what I now call the dream team. I’m more comfortable with my diagnosis than I’ve ever been. I’m more responsible on my own self care which includes the boring stuff, like making sure people are aware of my condition when in a high risk environment, not just colouring in and face masks. All of this shows in the fact that I’ve run not only one but three Epilepsy Awareness campaigns and I try to take part in various purple adventures of life.
So when you see me with my fully coloured hair, not just the purple it currently is but every colour that follows, know that that’s a big thing for me. I’m taking back control. I’m expressing myself creatively again. I’m not letting my fear of losing my hair again take over. I’m having fun.
Most importantly, I’m being me again and I haven’t felt this free in years.