Family denial of diagnosis - epilepsy
“It’s not epilepsy, it was a brain tumour”
That’s what he was trying to tell himself.
I was meeting up with an old friend, Joe. We hadn’t seen each other in ages! Great catch-up lunch (prior lockdown, before you ask 😉). I asked one of the usual questions: “How have your family been?”. It turned out, very, unfortunately, that Joe’s mum had had a brain tumour. But, due to marvellous treatment, all of the tumour had been removed (well, fingers crossed) and she just had to take some Anti-Seizure Medications. Oh.
The joyful epilepsy rears its ugly head…
Denial
I said that I was sorry to hear about his mum had developed epilepsy and that I was here if he or she wanted to talk. His response: “She doesn’t have epilepsy”.
So, I ask for what reason she was taking the Anti Seizure Medication (ASM). His answer: “Just to make sure she doesn’t have seizures again”.
Gently, I try to explain that although I’m not a physician, I’m pretty sure that a person who is prescribed the ASM Sodium Valproate (aka Epilim) to try and manage their seizures, tends to have epilepsy. He blushed and glared at me, slamming a virtual door of shame and embarrassment in my face.
Joe was in denial
Joe again told me that his mum hadn’t developed epilepsy. She hadn’t been born with it, after all. Argh!
Fellow humans: you can develop epilepsy at any point in your life.
I knew at this point, that it wasn’t the time to continue our conversation about his mum.
I was shocked to be honest, because in front of me I had an intelligent person, in his 20s, who’d been to university. Joe was rather academic, was in a minority-group of his own, and there he appeared to be ashamed to have a mum with epilepsy.
I could have been really upset or offended with Joe’s reaction and his voluntary ignorance (especially as I’m his friend with epilepsy, right?!). I felt for Joe for getting so embarrassed. But, maybe he was just processing things. Maybe he’s always had that painfully weak but common presumption “Epilepsy doesn’t ‘happen’ to anyone in my family” belief. I don’t know. I felt for his mum who I wondered had anyone to talk to.
Moving swiftly on from the awkward topic, Joe and I had a good chin wag and a lovely lunch. I let Joe know that I was there for him whenever and that it’d be great to catch up again soon.
Note
Epilepsy can start at any point in your life (from in-utero (yes, before you are even born!) right through to when you’re elderly)
If you have an injury to your brain - such as that caused by a brain tumour - your likelihood of developing epilepsy increases
If you are a loved-one in denial, this shall have a negative impact on the person with the diagnosis
Come on
Let’s avoid denial of an epilepsy diagnosis. Doing so is more than a tad silly. It’s morally and in fact socially, irresponsible. As a family member/carer you’ll make your loved one feel ashamed. You can contribute/cause them to feel lonely and depressed. Put them off taking their drugs - you’ll encourage further seizures, injury, and even potentially death/SUDEP.
Blaming yourself? Unless you’ve been abusing your loved one and causing them brain injury - you don’t need to worry! Genetics - that’s not your fault either!
Action
Let’s all grow a pair. It’s ok to tell someone (whether it be a doctor, friend, or therapist) that you are scared of the diagnosis and start learning about it! Remember, it’s a person’s ignorance/lack of education that induces fear and discrimination. Don’t be guilty of this yourself! You can best help those you love through educating yourself. This’ll bring you confidence in supporting them and talking about it with others.
Do you relate to Joe? It’s ok. You have made the first step in acknowledging what you need to do and learn! As cheesy as it is, I would high-five you right now!
If you’d like to receive my blogs directly to your inbox click here and I’ll send them over each week!
Share on social:
Please support me by buying me a coffee!
Alternatively, if you prefer, support me on Patreon!
Torie Robinson
Keynote Speaker, Podcaster, Epilepsy Sparks CEO, Editor, Writer, et al.
*A pseudonym