I’m someone who is in limbo. On paper, I have a disability, although this is something that I’m too afraid to say out loud. I’m afraid that people will not believe me or even criticise me for claiming to have a disability. A big part of me agrees with them, and that’s why for the most part, I don’t identify as someone who is disabled. I’m not physically disabled, and to most people, I don’t seem to be limited in what I can do.
However, every day I have to take medication in order to function as a regular person. I can’t do certain things that most people have the option of doing. Every once in a while, something will happen that will remind me that I am not normal. That I have a mutation that nothing or no one had any control over.
I suffer from epilepsy. Juvenile Myoclonic epilepsy, to be specific. When I saw a post asking for those who identify as suffering from a disability to share their story, I kept scrolling. I assumed it didn’t apply to me. It didn’t stop me from asking myself – is epilepsy a disability? Am I someone who is, on paper, disabled?
I turned to Google (I know, don’t judge me). According to Epilepsy Action Australia, “most people with epilepsy do not consider themselves to have a disability especially if they do not experience significant limitations…Regardless of how or when epilepsy developed and if it is completely controlled with medication, people with epilepsy are protected by the Disability Discrimination Act.”
So essentially Google was telling me to figure it out myself – do I identify as being disabled or not? As someone who has grown up with a disabled sibling and seen the struggles, stigma, assumptions and limitations that my sibling faces – no, I don’t identify as suffering from a disability. When I think about this, a part of me feels ridiculous for even considering writing an article about me and my epilepsy.
However, before I settled things then and there – I decided to turn to one other source of information. The source that always manages to answer the questions that Google can’t. I went to my Mum.
So at 11:30 pm on a Tuesday night, I flicked Mum a message, asking her if she thinks my epilepsy is a disability. Her answer reminded me of all of the changes myself, and my family, have had to make. Of how my epilepsy has really impacted my life.
Every day, twice a day, I have to take medication. If I don’t, then I start having fits. One fit, and I legally can’t drive for 12 months. When everyone else was turning 16 and getting their licence, I had to wait 18 months before I could drive due to fits and medication changes.
I also constantly find myself in a tricky situation – the main precipitators of my fits are stress and lack of sleep. As I am a university student, stress and late nights are unfortunately too common. Exam period has the extra stress of me waiting for a fit to happen, but I’ve been very lucky that so far I haven’t experienced any major fits or seizures.
However, one of the scariest parts about all of this is that generalised tonic-clonic seizures (also known as grand mal seizures, that cause your entire body to spasm and convulse and there is nothing you can do to stop them) are reported in nearly every person who has Juvenile Myoclonic epilepsy. I have never suffered from one of these, but I have been told to be prepared for it. I don’t know when, where, why or even if it will happen – all I know is that at any moment I could go into a full-blown seizure and have no control.
When I think about my family, I am reminded that my epilepsy has had an impact on my them, and not just myself. From the medications and emotional mood swings that go with them to the VERY expensive neurologist appointments – my family were there for it all. The random calls I get from Mum reminding me about SUDEP (sudden unexpected death in epilepsy) and how she is worried I’ll become a statistic reminds me that even if I’m not worried about my epilepsy, my family certainly is.
Ultimately, I’m lucky that I have access to medications and specialists which allow me to live a relatively ‘normal’ life – something which I have realised is a privilege that too many people are not able to access. I would encourage everyone reading this to go and support groups such as the ANU Disabilities Student Association and advocate for those who have disabilities to be given a fair go. From the NDIS to the resources that are available here at the ANU we can always do better to support those who rely on these resources –
– and we must do better.