They are actually different things and for a lot of various reasons. I am epileptic all the time. This can also be described as being a “person with epilepsy”. The second term identifies me as a person beyond the condition but in my opinion, I’m epileptic. I’m a lot of other things too and being an epileptic does not negate all the other aspects. Otherwise I am a person with epilepsy, a person who runs, a person who has two X-chromosomes, etc. etc. etc.
Anyways. Epilepsy. I am epileptic all the time. That does not change. That is unlikely to ever change. I have been epileptic for nineteen years.
Seizures. Seizures are an event. They are an occurrence. They are an electrical firing of neurons in the brain. I have been having seizures for at least twenty years. Seizures can happen in people once in their lifetime and then never happen again. Seizures can potentially be controlled through various means. Seizures can happen as a result of circumstances that are not related to epilepsy.
So why emphasize the difference?
I am epileptic all the time. This gets lost sometimes when I am trying to explain it and there is more than just seizures.
Medication: Every morning I take medication. Every evening I take medication. Before I go to sleep I take medication. I carry a purse, and any purse I have (even for formal events) needs to be large enough for me to carry enough medication.
Side Effects: There are lots, but I will refer to just one set. Two of my senses are virtually non-existent: smell and taste. Two have hyper sensitivity: sound and texture. That doesn’t mean I can hear everything. It means certain sounds are amazing (like voices), and certain ones are horrid (like cymbals). I love the way certain foods feel (like gummy candy) and hate the way ones feel (like bacon). This is just the way my brain processes information. It’s almost impossible to explain as well.
Travel: When I travel, I need to make sure that I have enough medication not only for the exact dates I am travelling, but extra in case I am stranded somewhere. Most travel insurance plans don’t cover epilepsy (as a pre-existing condition). There are still places in the world that consider epilepsy to be a result of demonic possession.
The Pharmacy: I am on a few medications (plus vitamins). The timing of each refill does not coincide, so I have to go to the pharmacy every week. Every week of every year. I see the pharmacists more than I see my family or friends.
Transportation: I don’t drive. So things like going to work, doctors appointments, hair appointments, getting groceries, attending yoga classes, picking up prescriptions, all take more effort and money than just getting into a vehicle. Public transit does not go everywhere in this city.
Disability / Medical Condition: If you can’t see it, is it really there? Short of providing EEG results, unless someone witnesses a seizure, how do I evidence that I have a condition? The injuries could have come from anywhere.
Those were just a few examples of the things associated with epilepsy. Overall though for me, epilepsy, is an inconvenience. It makes everything more difficult, but the condition on its own is just another aspect of me, like having those two x-chromosomes. Epilepsy, and having a uterus, are things I know exist and I can make plans to accommodate.
I have seizures sometimes. This is what people think about mostly when I say that I have epilepsy.
Seizures happen. They hurt physically and emotionally. They can result in injuries and physical trauma. They are embarrassing. Depending on their timing, they impact my ability to finish a race, travel, socialize, stay awake.
Types: There are different types of seizures. Some can go unnoticed. Some draw a lot of attention. Sometimes I have to tell people I’m having seizures because I can feel them but they aren’t visible. Sometimes people tell me that I’ve had a seizure, because I was wondering why I was laying on the ground.
Witnesses: People react differently to seizures. That can come with exposure, training, experience and general personality. I know people who have witnessed me having seizures on multiple occasions and still get emotional and panicky. I’ve known people who have seen it and on the first instance responded methodically. Seizures are traumatic to the witnesses as well as the person experiencing it.
Overall, seizures can’t be planned for. They can be more than an inconvenience. The seizures are what cause injuries.
When I run, practice yoga or swim, I am epileptic. When I shower, I am epileptic. When I take public transit, I am epileptic. When I am at work, I am epileptic. All the time. All the time. When I have a seizure though, whether it is a tonic-clonic, myoclonic, complex partial, simple partial or absence seizure, that is when I am noticeably and directly impacted. That’s when I’m at risk of tripping, falling or drowning. When I have a seizure, that’s when I could collapse on a train or at my desk.
I can’t change that I am epileptic. I can hope that through medication and exercise that the seizures can be controlled, but I can’t guarantee that. A person who has epilepsy is no more or less epileptic than another person who has epilepsy, but seizure conditions can be different. Both, epilepsy and seizures, need to be respected for the impact that they have on the lives of the people who experience them and the people around us.
And I know I’ve used that picture before, but I just want to point out that I was epileptic when I crossed that finish line (and still am for all future finish lines). Epilepsy. All the time.