What Doctors Don't Tell You About Life With Epilepsy

Unfortunately, some of us never had a chance to comprehend the information as to what caused us to develop epilepsy. Over the years, I have learned that sometimes it can be due to neurological or genetic mutations.

The assumption is that people get diagnosed when they are young, but many of us get diagnosed later in life. Sometimes I can't even imagine what it would be like to never really have an understanding, except for what they throw at you.

Doctors offer no help beyond diagnosis

I bring this up because a lot of doctors provide the medical term definition and don't expand beyond, "Oh, this will happen to you." As doctors, I would think they would want to make sure their patients are taken care of, and understand the care they are receiving.

Now, for those who had to comprehend the news later on in life, as I did, it's life changing. It's confusing because, for the most part, you were previously considered normal with no issues. Now, all of a sudden, you just had these two seizures, and it changed your life.

Medication helps seizures, but how do we cope?

They'll probably tell you, "Oh, this happened because something with your brain,” and order an EEG or MRI test. Sometimes, we wish that they would understand our concerns and not brush them off. It's just jitters, but, in reality, we know what we're talking about.

Understandably, we don't expect doctors to be our counselors, but we want the medical knowledge of what epilepsy is and how to cope with it, and not just, " Oh, it's multiple seizures and here's the medication to control it.”

The internet is our guide to epilepsy

What I have learned is that over 95 percent of us learn about epilepsy from various platforms, whether from the Epilepsy Foundation website, Facebook group chats, personal stories on YouTube, or content creators.

Unfortunately, the majority of us experienced confusion more than clarification after seeing the doctor. It doesn't help that most of the time, we are more confused after our neurologist appointment than we were before going in.

I think what makes it worse is when the neurologist or pathologist doesn't use the updated seizure terms. For example, there are still neurologists who say “complex seizures” instead of “focal unaware seizures.”

Where do we go for support?

I understand specialists/doctors are not meant to be our support systems. Regardless, what we want is respect and consideration, to know that we aren't another name to be responsible for their raise. I understand not all doctors are like this; it is a truth not discussed enough in the disability/medical community.

Doctors aren't supposed to be shoulders to cry on, but the lack of support for clarification destroys confidence, and makes confusion about epilepsy/seizures worse. For those who have supportive epileptologists/neurologists, be truly grateful. Within the first year, as we adapt to the new norm, the lack of clarification can make information hard to obtain.

Social media is our most powerful tool

While change won't occur overnight, we can't keep living as if it's acceptable to be neglected by the healthcare system or, to be a truthful, society overall. What people never expected was that social media would be the solution to many questions, but also a source of many misinterpretations. So, what do we want? The epilepsy community wants communication and transparency from the media, healthcare system, legislatures, schools, and advocacy centers.

Social media is, right now, the most powerful tool the community has to spread awareness. From voiceovers to personal stories, we feel some type of comfort in a world full of confession. To spread awareness, people need to see seizure videos—all kinds, not just convulsion seizures.

Social media can also be cruel

The dilemma is that it is a love-hate relationship, that seeing seizures online can taint efforts at education. Caregivers need advice, especially if it's their child, but they might get judgement and cruelty in exchange.

For instance, Facebook support groups are notoriously known for being more harmful than helpful. When it comes to epileptics, newly diagnosed or seasoned, we all want support and judgment pushes people away into hiding their struggles, which makes it more complicated to spread awareness.

People with epilepsy need to unite

In a world that is destined against us, we should have a safe space to talk without any judgment. Besides transparency and communication, epileptics want a community that is united, not divided.