Emotional and verbal abuse

 It's true that many people with epilepsy become victims of emotional, verbal, and mental abuse. You don't have to be hit for it to be abuse. I lied to myself dozens of times thinking that I wasn't being abused by one of my aunts since she didn't hit me. 

I've had epilepsy since I was a kid and my mom and grandma were very protective of me. Thinking back, there were numerous times when I felt as if I were treated like porcelain. However, thy loved me unconditionally. I thought my aunts, uncles, and cousins did too. 

But it took the deaths of my mom and grandma in 2023 to realize that it wasn't completely true. Emotional and mental abuse isn't always obvious. It can start as jokes (at the victim's expense) or words that seem like constructive criticism. For me, it started with being criticized because I snored at night. It led to being yelled at and embarrassed for personal issues. 

Anyway if you suspect that you're really just experiencing emotional or mental abuse, here are some signs that you could be correct: 

1. Yelling, name-calling, and use of derogatory words towards you. 

2. Making threats to hurt you, damage your personal items, or put you in situations you don't want to be a part of.

3. Embarrassing you in front of people you either do or don't know.

4. Forbidding you from seeing friends, working, going to school, or even having access to money.

5. You develop the feeling that you can't be yourself because normal people don't laugh or like the kind of things you do. 

6. Being blamed for the abuser's short-comings or for things you know that you don't ever do. 

7. You start lying to yourself that it's not abuse since you were never physically hurt.

8. Being brainwashed into thinking that you're not loved and that people only want what they can get from you. 

If you experience any of these, make a safety plan and get away from the person. Any kind of abuse is never your fault. Don't lie to yourself by thinking it'll stop eventually because it won't. 

46

Feeling embarrassed over the fact that you wet yourself

Yesterday I had a seizure and vertigo. I was embarrassed about the fact that I wet my pants and needed a clean pair. All my aunt did was scold me and say, "Will you hurry up and put them on right? The paramedics don't have all fucking day to wait for you.

Does anybody who reads this post think that kind of comment is abusing someone with a disability?

#45

Being told by a family member that they're going to have you put away in a "home for retards." 

#44

 The emotional and physical abuse your body goes through having epilepsy is very difficult, if not impossible, to explain to someone who has never gone through it. Trying to explain the overwhelming emotions you have after having a seizure is frustrating 

Now you see me, now you don't!

 This is a true fact for me when it comes to dealing with epilepsy!

What you CAN see:

Love

Triumph

Laughter

Peace

Calm

Safety 

Joy

What you CAN'T see:

Flashbacks

Stress

Paranoia

Triggers

Trauma

Anxiety

Depression

Fear

Exhaustion

Insomnia

Pain

-jessi

43

When a new doctor talks to you about having a VNS implant as if it's your only hope of having control over seizures. 

When a doctor was telling me the best possible type of treatment would be the VNS implant, she was sounding as if that would be my only hope of having a life seizure-free. I don't like the word surgery to begin with. Plus there's no telling whether it would or wouldn't work. Everyone's different, I think.

42

When the injuries you get from your seizures make simple things like brushing your hair or getting dressed intensely painful. 

The summer before my senior year of high school, I had a grand mal seizure and ended up not only with a concussion and bad sunburn, but I had dislocated my shoulder. I couldn't lift it without being ready to scream.
Trying to put my shirt on hurt.
Trying to lift my arm so I could brush my hair hurt.
So I had to rely on my nan to help me do such things for the rest of the vacation, which very much sucked! :(

Valentine's Day

February 14th is coming up. Yup, that's right. It's Valentine's Day.

Now hang on a minute! Before you say that you hate it, let me say that it's not necessarily about JUST showing love for your significant other or your feelings about someone you're interested in. 

Would you be surprised if I told you Valentine's Day was really named after a patron saint who had epilepsy? Believe it or not, it's totally true. 

Valentine is, in fact, the German word for "fallen." At one time, epilepsy was considered "falling sickness" because of the fact that a lot of seizures caused those that had it to fall and lose consciousness. 

There are other stories that the bishop named Valentine von Terni freed the son of an orator from an epileptic seizure as well. 

Anyhow, when you think of all the hearts, cards, candy, and gifts for your significant other, do not think of just how you love your significant other. Love the fact that you are lucky to be healthy. And if you do indeed have epilepsy, love the fact that you're able to get through a day without having a seizure. :)

St. Valentine, pray for us! 

A piece of advice for you all

If you have to have an EEG done, cut your hair really short 2 days prior to having it done. Why? The glue that the technician put on your scalp to stick the electrodes on is incredibly difficult to wash out! When I had to have an EEG done, it took me 3 times to shampoo my hair to get all the glue out. 

Your hair will grow back eventually! 

41

Being denied dental treatment because of your epilepsy

I was diagnosed by a dentist today with 2 small cavities on my two front teeth...possibly from an old filling. Unfortunately, however, because of my epilepsy they won't give me treatment. I would have to be 6 months seizure free before they can fix the cavities and clean my teeth. I was really angry, but didn't show it.
Shit man! I'm lucky if I can even pass 2 months without having a seizure! So in the meantime, I'm stuck with small cavities and possibly never being able to get any dental treatment.
I thought ALL people had the right to get dental treatment...even those with chronic disabilities!!!
I wonder if anybody else with epilepsy has ever had this issue. And if they ever have gone 6 months without having a seizure, I'd love to know what their secrets are.

Yup!

4 stages of a seizure

I found a photo on a Facebook called "4 stages of a seizure." Remember: Every person is different, so not every person will experience these. However, they are common.

Stage 1: Prodromal phase
It usually can occur from hours to even days before the seizure occurs. Signs consist of insomnia, unexpected and unusual grouchiness, severe headaches, and depression.

Stage 2: Aura
Typically the start of a seizure. Signs consist of nausea, migraines, sour tastes or smells, and feeling a sense of doom.

Stage 3: Ictus
The seizure itself. They range from grand mal to petit mal.
Common signs include jerking movements, loss of conscious, blank look on the person's face, falling to the floor, stiffening of muscles, convulsions, labored breathing, and/or an inability to respond to those around them.

Stage 4: Post-ictical
The phase that follows a seizure. It ranges from being very brief or lasting for several days. There might be severe tiredness, irritability, vomiting, fevers, migraines, confusion, balance problems, and/or changes in speech and behavior.

An aura is one symptom of a seizure

An aura is a symptom of a seizure beginning to occur. Some common signs that happen before a seizure are the following

• Strange smells or sounds
• A metallic or sour taste in the mouth 
• Blurry vision or temporary blindness 
• Racing thoughts
• Feeling the urge to vomit
• Feeling a sense of doom
• Dizziness/being light-headed
• Headache and nausea
• Numbness/tingling

Acting quickly if you spot these signs and being ready to seek medical help or perform seizure first aid is key! 

One wish...

40

Having seizures at work

It's happened to me before twice while I was a preschool teacher and twice when I worked in a science museum. It's not only humiliating, but there's always the fear of having my job taken from me.

39

Fear of having a seizure while trying to cross the street

I don't just have the fear of that happening...it actually did happen to me.
In November of 2007, the day after Thanksgiving that year, my mom let me walk to the library to take back a book that I had finished reading. After leaving the library and getting ready to cross the street, I had a grand mal seizure. Someone called 911 and I was taken to the emergency room at St. Joseph Hospital. Thankfully, I wasn't hit by any cars!
And luckily for me, I haven't had to go to the ER for seizures since that year.

38

Filing for disability more than twice, getting denied, and finally losing all faith in the social security/social service system. 

-jessi

37

Trying to stay hopeful and have faith, but you get bitter and mad as hell when you think you're doing well and have yet another fucking seizure! 

I've felt mad as hell so many times that I've lost count. I grew up feeling alone, bitter, and at one time, I had no optimism. Years ago, if you would've told me, "You're not alone. There's many people going through the same condition as you," I would've scoffed at you and said, "Sure damn easy for you to say!" Eventually I learned that I really was not alone and made a few friends online that have gone through the same feelings I have dealing with epilepsy.

36

When you have absence seizures and people accuse you of daydreaming or ignoring them because of your inability to talk or respond. 

35

Being asleep for hours after having a seizure. Enough said?