- There are over 40 types of seizures and over 100 syndromes connected to epileptic seizures. Not all seizures are the same. Not all are convulsive (falling/shaking), some are extremely easy to miss as they appear as though the person with epilepsy is just daydreaming.
- Despite ancient Romans going as far as spitting on the chests of epileptic people to avoid catching the disorder, it’s not actually contagious. You can’t catch it from somebody else, it’s either something you’re born with and it presents itself when its ready or you sustain a traumatic brain injury (TBI) through an accident or secondary disease which leads to epilepsy.
- Epilepsy is NOT a mental illness but a confirmed neurological condition. Electroencephalography (EEG) is a monitoring method to record electrical activity of the brain. An EEG can pick up a seizure or blips of seizure activity that’s not intense enough to cause a seizure. If anxiety or depression showed up on EEG’s mine would always be going haywire but they don’t.
- One of my Instagram followers told me that “People think I’ll hit the deck if I see a flashing light” which is not one of their triggers. In fact photosensitivity epilepsy is one of the rarer kinds of epilepsy. With that being said, you don’t know somebody’s trigger(s) unless you ask so air on the side of caution, ask, listen and respect boundaries. Also remember photosensitivity is also a trigger for a few other conditions so it’s still a good idea to be cautious when playing around with that kind of technology.
- Another misconception is that epilepsy is an illness or disorder, it’s not but it is a neurological condition, neuro disease or disability.
I, and many other ill and disabled people, have been asked invasive questions by total strangers on multiple occasions. It’s ableist and uncomfortable to say the least.
But what about friends and family? How can they ask about our conditions without falling into the same category as those offensive strangers? Perhaps how can strangers be less offensive and invasive.
Step one is showing from the start that you have respect for their option to decline answering. Just because they know you doesn’t mean they’re ready to share every little detail with you. This can be done by opening the conversation with “I’m going to ask you a question about your health, but I respect that you may not want to answer. I take full accountability if I overstep here.”
Try to know what you can before asking. For example, I’m epileptic so if you want to know what kind of seizure I have try to know the common types so you can ask “do you have tonic-clonic seizures or absence? What does that mean?”
Everyone is different when it comes to how open they are to questions and educating so self-education, even the tiniest bit, can really help and shows you genuinely want to learn for the right reasons. This will make the person more likely to open up rather than take the approach of making you educate yourself entirely.
Don’t start with an apology. “Sorry I don’t know much but can you please explain [insert topic].” There’s no need. We don’t expect you to know everything, sometimes doctors don’t know everything, so we certainly don’t expect you to know everything.
Instead try “hopefully this isn’t too much to answer but or can you tell me where I can find out more.”
Remember it’s not our responsibility to educate you on everything.
Be confident but not overconfident. If you’re shy and stammering because you’re scared to ask, you’re probably going to frustrate the patient. Come in overconfident and you’re going to annoy the person in question. You’re just talking to a fellow human so treat them as such.
Sometimes one of my friends who asks a lot of questions will come in shy and I just want him to spit it out and start to worry it’s going to be offensive but most of the time he asks me the same way he asks me what I want for lunch and it makes it a comfortable environment for the conversation which makes it much easier to answer his questions. What also helps is he has a lot of patience as I try to find the right way to answer the question.
For example, he frustrated me by asking me to lift each leg one at a time and stared at me. Big no. This made me frustrated and uncomfortable. Turns out he wanted to ask how I can move (albeit with limited motion) my leg with functional limb weakness. Once I had the question, I could actually have a conversation, without being a science experiment, and give him the answer he was looking for. However, it wasn’t until the next day that I had the perfect answer which was okay with him because he genuinely wanted to know.
In case you’re now also wondering how it works; the wires that tell me my leg is there, that I can feel it and that it has strength to stand on are mis-wired so the messages from my brain aren’t getting through but weak signals from the wires telling to move it occasionally get through.
This one is especially important when talking to strangers or friends/family that have only just been diagnosed or started new treatment; “Please tell me to leave/change topic if this is too much” or “I know somebody else who appears to be in a similar situation, do you mind if I ask a question.”
I leave you with the most important note of all, don’t make assumptions or ask blunt questions like “what’s wrong with your face?”. This is incredibly disrespectful and falls under ableist micro-aggressions. I’ve had plenty of people, friends, family, acquaintances and strangers ask blunt questions (“what’s wrong with you now?” “why do you look like that” “what did you do this time?” “why are you so skinny?” “why have you gained so much weight?” “why aren’t you eating?” etc.) and it often triggers me to go non-verbal with my autism because I feel so disrespected and unsafe.
Be kind, open, respectful and ready to look up resources given to you and you should be just fine.
Not often enough do we talk about the harm and damage medical professionals have caused patients and their loved ones.
I’m now on an advisory board for CheckUP where I will speak about the injustices done to me and my community. From there the CheckUP members will discuss with their medical professionals they have on board and we will all discuss the best way to make great change in our medical system.
Just yesterday I was speaking to EQI staff member and my CheckUP aid member about how, while the causes are different, my undiagnosed gastro issues that seemed to be ignored at best by my first opinion gastroenterologist are bringing me back to a time where the side effects of my epilepsy medication were ignored and both have/are leaving me to starve.
I’m keeping an eye on my hair in case I lose it again, I’m keeping watch of my weight and my clothing sizes in case I get to where I was again. I’m scared. And not just scared to go on a rollercoaster kind of fear. I’m scared for my health and life. A fear nobody should know of but too many do, including young children.
I’m hoping by teaming up with CheckUP and sharing my stories others won’t have to take that uncomfortable step into speaking so publicly about their own medical trauma yet I can still help them.
However if you do want your story to be heard reach out to me through comments on here, contact on here or direct message on Instagram and I’ll make sure your voice is heard at the next meeting.
Have you ever walked by a mirror and not recognised yourself?
That’s what my new fundraiser is for.
A dollar for every hair lost and every time I didn’t recognise myself in the mirror as I lost my hair due to epilepsy treatment and as I recovered. To this day, I occasionally have to do a double take as I walk by a mirror because for a split second I recognised the person looking back at me but, for the most part, I don’t recognise the person in the mirror. I see all the features that make me, I even see my hair again now, but I don’t see me.
My sense of identity has permanently warped me into an alien I’ll never truly recognise again. But the minute moments where I do identify the person in the reflection, it’s just as weird a feeling. I still ask, “Who are you?”
It makes sense to me as to why this happens.
Hair is a large part of identity to some and I lost it without control or much support.
What confuses me is, how do I get rid of this morphed image I see in the mirror and bring the real me back? It’s been 4 years since I was taken off of that treatment and allowed my hair to grow back and I still don’t know how to fix this. I thought it would fix itself in time but apparently that’s not the case.
I feel disconnected from my body and not in a dissociative manner caused by FND.
I’m not alone in this. People with epilepsy often lose their hair due to treatment, testing and surgery. While some own this moment in their life, many of us are left in this scary and confusing state.
I want to run the My Hair, I Care fundraiser in honour of my own experience and those of my community. Raising money to help our community through Epilepsy Queensland Inc. and demonstrating solidarity through people altering their hair in our honour.
So if you ever been in my shoes this is for you and if you haven’t you can join my team here to fundraise by getting people to sponsor you to cut, colour or even shave your hair. All are welcome here.
Today we’re having a history lesson. I’m super passionate about the history of my people in all aspects, even if it hasn’t been very well recorded over the years due to the shame the abled world has pushed onto us.
The point of this history lesson is to stop people from laughing at the expense of those with epilepsy.
Epilepsy has been affecting people at least since the beginning of recorded history.
Ancient history believed epilepsy to be a spiritual condition.
The world’s oldest description of an epileptic seizure from the language use by ancient Mesopotamia, Akkadian, text and was written around 2000 B.C. The person described in the text was diagnosed as being under the influence of a moon God and underwent an exorcism.
Ancient Greeks saw epilepsy as a form of spiritual possession also but associated it with genius and divine instead. Epilepsy appears throughout Greek Mythology and is also commonly associated with the moon.
Ancient Rome didn’t share pottery with people with epilepsy in an attempt to avoid catching epilepsy. People would also spit on the chests of people with epilepsy to avoid being affected as they believed epilepsy was contagious.
In 1780 B.C., The Code of Hammurabi lists that slaves may be returned for if the slave were to have seizures in the first three months of ownership. The code also dictates that a person with epilepsy couldn’t marry or testify in court.
During the fifth century B.C. of classical Greek a physician, Hippocrates, rejected the idea of epilepsy being a spiritual related disease. He proposed that epilepsy was not divine but a medically treatable problem. Instead of referring to it as the ‘sacred disease’, as was common practice at the time, he decided to call it the ‘great disease’ instead. This decision gave rise to the modern but now outdated term ‘grand mal’ for tonic-clonic seizures. Despite his work of great detail, his view was not accepted at the time and people continued believing epilepsy was of a spiritual, usually negative, nature.
Evil spirits were blamed in majority of the world until at least the 17th century.
In the 18th and early 19th centuries people with epilepsy were labelled as insane and locked in asylums with incredibly poor treatment. Around 1825 Jean-Martin Charcot found people with epilepsy side by side with the criminally insane in Pitié-Salpêtrière University Hospital, the birthplace of modern neurology. Until the late 1800’s, people with epilepsy were often incarcerated as ‘criminally insane’ despite some stigma easing in Europe and North America due to beliefs shifting from psychiatry to neurology.
In 1956, 18 US states provided for the sterilisation of people with epilepsy on eugenic grounds.
Organisations like Epilepsy Queensland Inc. were only founded in 1969. The Kemp family were inspired to found EQI due to their son with epilepsy being fired repeatedly on discriminatory grounds. This discrimination was commonplace with no anti-discrimination laws in place.
Until the 1970’s it was still legal in the United States to deny people with epilepsy entry to public places such as restaurants, theatres, recreational centres, etc.
In the United Kingdom, a law prohibiting people with epilepsy from marrying at all was repealed in 1970.
Before 1971 in the UK, epilepsy was grounds for marriage annulment despite the common vow “in sickness and in health”. To this day in India and China, epilepsy can justify denial of marriage and it primarily targets women in a further act of discrimination.
People with epilepsy in the United States were forbidden to marry in 17 states until 1980.
In a 1987 ruling, the United States Supreme Court ruled that “a review of the history of epilepsy provides a salient example that fear, rather than the handicap itself, is the major impetus for discrimination against the people with handicaps.”
As late as the second half of the 20th century, in Tanzania and parts of Africa, epilepsy was associated with possession by evil spirits, witchcraft, or poisoning and was believed to be contagious.
Today stigma can interfere with timely access to healthcare, early diagnosis, which is extremely important, and treatment.
The negative perceptions of epilepsy among medical professionals and structural discrimination resulting from stigma can impair the service utilization, particularly when there is scarcity of resources for treatment, rehabilitation and research.
In south India, for instance, parents of children with epilepsy tended to isolate themselves from others in their social network.
Around the world a young child with epilepsy may be refused continued access to education because social attitudes in educational institutions are prejudicial and discriminatory. I personally was denied access to continued education during my time in hospital and home care while in high school.
While some countries have laws in place where people with epilepsy can obtain a licence after a certain period, typically a year, of being seizure free, people of India simply can’t get a licence.
Insurance cover to people with epilepsy in India are issued at disadvantageous rate and are denied benefits in the event of accidents and/or death occurring due to epilepsy.
People with epilepsy find it harder to find a stable job as uneducated employers will often find a way around anti-discrimination laws that may be in place, some countries don’t even have these laws, to not employ the potential worker who is fully qualified for the job. If they find a job they may be refused advancement in their role or be treated differently by their employer and peers for having epilepsy.
Another obstacle faced worldwide, especially in rural areas, is lack of access to comprehensive epilepsy centres. In 2017 somebody presenting to a rural area hospital was left by doctors and nurses to experience seizures a publicly accessible space outside of the hospital because they believed she was faking for attention when, in reality, they were not accurately educated.
In this same rural area I was personally told that I shouldn’t be an activist because people with epilepsy live perfectly fine lives, so there was no need for what I do.
Todays media is just as harmful as the real world.
While Grey’s Anatomy is a progressive show that educates as its team learns, in 2005 the show used terms like “fish out of water” to describe somebody having a seizure. This is harmful and hurtful language that is dangerous to use in major mainstream media in modern times.
Even more recently a study of Twitter with authors from Dalhousie University in Canada found that of 10,662 tweets containing the word “seizure” collected during a single week in April of 2011, 41% were considered to be derogatory in nature.
People still video people having seizures unpermitted to mock the people being recorded. People with epilepsy are constantly the butt of generic, offensive, overly used jokes that have stuck around years upon years.
In 2019 after actor, dancer and philanthropist Cameron Boyce died, people acknowledged his death by posting videos of them poorly imitating seizures as the #CameronBoyceChallenge.
In 2020 the #SeizureChallenge rose to fame in mainstream media when people used social media platform TikTok to post videos of themselves faking seizures. In the background of the majority of these videos was a song from musician Juice Wrld who died after a seizure that was brought on from drug use. His death made headlines worldwide and this was people’s way of acknowledging that during their already offensive ‘challenge’.
Negative stereotypes of people with epilepsy have been so ingrained into society that many with epilepsy accept them. We also sit by silently when things like these TikTok videos arise. I hope by speaking about our own experiences and taking ownership and pride of our history we can change these habits and feel empowered to make change, even if the only change we make is amongst our friends and family.
It’s hard to celebrate good news when surrounded by bad news.
I’m officially epileptic seizure free! After over a decade of epileptic seizures, of medications that slowly drained the life from my body, of neglectful doctors who wouldn’t admit that they didn’t know what they were doing, I’m finally epileptic seizure free.
I didn’t give up even though I wanted to many times, my mum never gave up on me and my new medical team of Pete and Sasha never even considered that my case was worth anything less than all the work they put into it. It all paid off because I’m 21 and epileptic seizure free.
This is worth celebrating and thankfully, while covid-19 lockdown limits me from doing much, I have people who remind me to not forget the good and I’ve sold a few of the paintings I create to cope with the bad, so I can afford to treat myself in celebration. (Buying a hoodie from my own merch line that you can get here is a good treat, right?)
Unfortunately for me, in the same mouthful as the above good news, I was also given bad news. My Functional Neurological Disorder (FND) is worsening and intensifying. I must try a new approach with my treatment plan as what I’m currently doing clearly isn’t working. New things scare me. Treatment for FND can be a lot harder than Epilepsy treatment in certain aspects, which is disappointing as I’m already exhausted. I’ve spent majority of my life fighting with my body and the medical system to be able to get to where I am. I just want to rest but I can’t afford to stop treatment without the high risk of slipping further behind.
FND is also making it hard to process that I’m epileptic seizure free as part of it getting worse is my non-epileptic seizures (caused by FND) are beginning to imitate my epileptic seizures. My FND is accessing the part of my mind that holds memories of my epileptic seizure patterns and uses that information to replicate the thing I’m celebrating the end of.
It’s hard to feel happy that my epileptic seizures are gone when, quite literally, every other morning I’m waking up feeling like I just had another. At least now I know it’s FND but that doesn’t make it much easier.
FND steals my independence and abilities, it takes away my ability to live life rather than just survive, but as if that wasn’t enough it takes away the joy of the miracle I never thought would happen. I’ve spent countless occasions feeling hopeless with tears pouring down face for over half my life, feeling like I’ll never get to feel the euphoria of being seizure free. I was right. I’m epileptic seizure free but I’m yet to share in the euphoria my community experiences when reaching such milestones because I’m not yet truly seizure free and yet again I’m not sure I ever will be.
I share this, despite it being quite sad, because there are many stories that sound like the opposite of mine but where’s the diversity. It took me a while to be able to process my feelings into such words but I’m sure I’m not the only one who has such an experience or feels alone in this part of their journey.
It’s also just good to tell the world how you feel sometimes and for the world to have diverse perspectives.
P.S. if you could all congratulate the young Renee for making it this far when she never thought she would, that would warm my heart for both young and old Renee.
My friend Hannah and I look nothing alike but we both look autistic simply because all autistic people look like themselves. Autism is a part of a person’s identity. There is no one look that autistics must have to match their identity.
When you say “you don’t look autistic” it’s not a compliment and here’s why;
- I am autistic. I know my identity but you’re questioning it. That’s incredibly uncomfortable, especially given that this comment is usually presents itself in a situation where the person receiving such comment feels the need the grin and bare in response. We don’t feel as though we can present a defence against the comment.
- We must sit with that discomfort in a place where we are masking for extended periods of time until we can process it comfortably.
- That comment reminds us of our ability to mask despite not wanting to have to mask to begin with.
- It can be divisive between those who can mask well enough to get the comment and those who can’t when we just want to be a united community.
- It reinforces a harmful stereotype. Need I say more?
- It’s a concept that simply does not exist. It’s a misconstrued concept of how you think autism should “look” as compared to the educated knowledge that no two autistics are the same therefore you can’t have any one image to project.
Please stop using this harmful language and be an inclusive ally.
I am autistic therefore I look like I’m autistic even if it doesn’t fit your stereotype image. Just like I look like a Caucasian without looking like every other Caucasian.
Last April, during Autism Acceptance Month, I told the world I’m autistic and proud. (You can click here to see the original post) That pride stands strong. However, I also said I would do my best to quit masking and that’s been harder than I imagined.
When you’ve been masking, without even knowing what masking is, for 20 years it’s hard to just stop. It’s engrained in your day to day systems. While yes, in my last post I mentioned that you can make mistakes while trying to mask it’s still a thing that, at some point, you start to automatically do when faced with situations that you believe involve the need for masking, which is most situations.
My masking stops me from stimming when anybody, even my own mum, is in the room, it stops me from talking about my special interests especially to the degree they interest me, it makes me stay quiet when I hear an offensive joke/comment because I can’t go against what society says, it makes me agree with whatever is suggested because I can’t be trusted making decisions as I don’t want to disrupt normality or upset anybody and I don’t make the jokes I want to because I worry only I will find it funny. I mask my emotions in various situations because my emotions aren’t the ones that matter here.
All of these places others above myself and prioritises them and their social comfort above my own. It minimises myself as a person and belittles me. Masking creates a new identity that isn’t me.
Those are ideals that are hard to break. Convincing myself I’m worth the same amount of space as neurotypicals (NTs) is a slow process for me and my low self-esteem. Identifying what parts of me come from masking and what parts are genuinely me is a complicated process and projecting my newfound self is possibly the scariest part. I truly do have to dig through all the “socially acceptable” rubbish to find the me I’ve hidden and learn who they are.
At times it’s all a thrilling process, getting to learn who I am means exploring new things or things I once had interest in but had to leave behind. I get to unapologetically recreate myself into the person I want to be and feel most comfortable as.
At times it’s incredibly uncomfortable. I have to face the feelings I’ve suppressed, and the feelings masking has embedded in my heart. I have to deal with the fact I’ve lost time that I could’ve spent being myself and helping others feel better about themselves instead of hiding like I did. I worry about my loved ones not loving the “new” me. I’m becoming unapologetically myself while still having to be aware that masking is a safety mechanism that protects me from the abuse of ableds and NTs so I realise I can still never be myself at all times.
I’m creating a new computer system but have to keep the firewall up.
The real Renee wants to focus on the small joys this is bringing me so far though. Therefore, I find it worth continuing to unmask. It’s just going to take more time and work than expected.
A lot of events around the world have been cancelled or postponed and for good reason, but I want to talk about why I’m sad that I’m not spending today at South Bank.
While anybody who knows me knows I love the colour purple, Purple Day is more than just a colour. Don’t get me wrong, I love that one day a year it’s acceptable to wear purple excessively but that’s not the priority.
The priority is the people. We celebrate the workers all around the world who spend their time making our lives easier, the activists who go out of their way to fight for our rights, the people with epilepsy surviving and their support systems.
Purple Day is an important event every year where I, somebody who has spent almost a decade feeling isolated and ‘othered’ by this disorder, can feel like I’m one with others. I get to celebrate in an environment created for me, free from judgement and discrimination. I celebrate somewhere I can unapologetically be myself surrounded by people who understand me, somewhere we’re all equal and worthy and don’t have to fight to be seen as such. It’s a safe space where this isolated and othered person can have fun with others just like them. A safe space I wish I had sooner to combat all the negatives I’ve faced during my journey with epilepsy.
Part of Purple Day is also about educating those who may not be as aware about epilepsy as they should be. This is something I work hard at all year every year however this year I had to listen to my body’s needs and change my approach, so it was important for me to get to still enjoy fun times and feel valid with my community.
This year is my first Purple Day as part of the official Purple Day organisation’s ambassadors, so I wanted to commemorate it with a big, fantastic, purple, day.
Hopefully, in case you didn’t know before, you realise now that Purple Day is more than just a colour, it’s a community.
Today is the first time I’m celebrating FND Day and with Purple Day just hours away, it’s a busy week for me to say the least.
Today I’m explaining more about FND as even close friends know that I have it but have no idea what that means for me.
Let’s start with the basic, FND stands for Functional Neurological Disorder.
FND can be caused by psychological triggers, physical triggers and a mix of both. In my case it’s a mix of both. It’s important to understand all possible types of triggers as this can affect the type of treatment needed.
As FND has a long list of symptoms, with each case experiencing different symptoms in a way that’s unique to them and presents in both physical and mental manners it’s important to get the adequate treatment.
For example, I experience extreme anxiety that’s hard to treat but we try with neurpsychology with medication from my neuropsychiatrist.
I also experienced functional limb weakness for 4 consecutive months in 2019 and now need physical rehabilitation to help me walk again. Psychology obviously would not help with this symptomatic problem.
It must be understood that FND symptoms can’t be controlled. If it could I’d rather be in dance class or ice skating with my best friend instead of learning how to walk again by myself. I also would never make myself have a non-epileptic seizure, where I can hear and feel everything, as that only adds to my psychological trauma and triggers.
For some FND is treated adequately and soon after it’s triggered which can lead them to only having a temporary disability. Unfortunately, not everybody is this lucky.
Sometimes it really is just about luck, some people don’t respond to treatment as well as others, but a lot of the time it comes down to the fact that people can’t be diagnosed soon after being triggered as doctors aren’t as aware of FND as we’d like. Once being diagnosed, people with FND also must face doctors who aren’t well educated but don’t wish to admit it. Some doctors simply don’t know what they’re doing with FND treatment and even try to treat all symptoms with psychological options even if the symptoms presenting have nothing to do with the psyche.
This means some people, such as me, are left with a permanent disability.
Despite the fluctuation in how long the disability lasts and the variation in who ends up with a permanent disability, FND is definitively a legitimate disability.
However, professionals seem to be behind on the times, yet again.
According to the classification guidelines of the International Olympic Committee for para sports, functional impairments are not a recognised/eligible impairment.
This stops talented, authentically disabled, athletes from following their goals.
Something needs to be altered there and I hope when the time comes, I have your support in the fight for change.
In the meantime, here are some ways to help those with FND or make things more accessible for us;
- Make sure everywhere is accessible to mobility aid
- Keep in mind that for some, some of their symptoms can be triggered by sensory input so consider the environment you’re creating
- Our symptoms can include or cause fatigue so please be patient with us and please be understanding if we need to alter or cancel plans because of it
- Be patient with us during dissociative attacks, memory or concentration struggles, speech troubles
- If we have pain problems caused by our FND (CRPS for example) please be considerate of what could cause us more pain and what our pain limits us from doing
- No matter how funny you think it is, don’t laugh at the hick-ups our symptoms cause until it has been clearly established whether the person with FND is comfortable with that. (For example, I don’t mind laughing at my speech mishaps in most instances but for some it’s a major insecurity)
I hope you learnt something new and now better understand the condition that’s by my side every day this FND Day!