Life with epilepsy can sometimes be frustrating, to say the least. Your body loses control of itself, and despite doing everything right, it continues to cause a plethora of side effects and uncomfortable symptoms.
Even though your condition is yes, caused by overexcited brain activity, it’s not your fault, and it’s not something you have much control over. Yet, feelings of guilt, shame and embarrassment are so common amongst those with epilepsy. Whether your symptoms are visible or invisible, it can be difficult some days to feel confident in a body committed to malfunctioning.
I’ve lived with epilepsy troubles for over a decade, and though I know that there’s no reason to be embarrassed about side effects and symptoms that are out of my control, it’s still so hard to live it out when, should I have a seizure, it sometimes causes me to drool or stare off, or my medications cause weight fluctuations, or my symptoms prevent me from taking part in activities most people are able to do without a second thought.
If you don’t feel any embarrassment surrounding your condition, terrific! Don’t allow anything to change your outlook. But if you do struggle with feelings of embarrassment, just know that you’re not alone. The only way we can break the shame and stigma surrounding “embarrassing” symptoms is to talk about them.
Even though there’s no need to feel embarrassed of something that’s completely out of your control, experiencing these feelings is understandable and completely valid.
Take a look at these seizure symptoms:
Loss of Bowel or Bladder Control
Seizures can cause the muscles to become weak. This includes the bladder and urinary tract. With muscle contractions and weakness, the pelvic muscles might become unable to hold urine. The result? Accidental leakage or loss of urine.
When this happens to a person who has just had a seizure, it can be embarrassing.
Offering reassurance is a great way to provide support. Their overall health and wellbeing is where the focus needs to lie and not solely on incontinence.
Seizures cause a loss of muscle control, which can make it difficult to swallow or open the mouth. During a seizure, the excess saliva tends to pool in the mouth.
This is why one of the most important tips of seizure first aid is to turn the person onto their side to avoid choking on their saliva and allow it to drain out of the mouth.
Sometimes I feel a bit embarrassed regaining consciousness from a seizure with saliva running down my lips and chin and onto my clothing.
A person might stare blankly or look like they’re daydreaming. This is a red flag indicating that a seizure might be approaching or one of the features of an absence seizure (sometimes called petit mal seizures).
For those who aren’t familiar with epilepsy or have never witnessed a seizure, it can give the misconception of disinterest or being under the influence of an illegal substance (drugs).
Sometimes I feel embarrassed when I stare off because I can’t just ‘snap out of it’ and conversations or certain tasks are disrupted.
Seizures can leave a person feeling confused or disoriented.
Sometimes, it’s difficult to recall information directly after a seizure. This is known as “post-ictal confusion”.
The length of time it takes for memory to return to normal can vary from person to person. It’s reported to last for hours but may continue up to 1 to 2 days.
Being asked to recall names, dates, or locations following a seizure, can feel embarrassing when the mental slate is blank.
I used to feel embarrassed following a seizure when family, paramedics or doctors would ask questions such as “Do you know where you are?” and “Can you tell me who the President is?”
Like a scattered puzzle, my brain works to piece itself back together, unable to comprehend these questions straight away.
Mumbled or Jumbled Speech
Seizures can sometimes impair the ability to communicate with others. The brain is in “recovery mode” and trying to have a tangible conversation could consist of mumbled or jumbled words.
Sometimes I feel embarrassed when making the effort to speak coherently following a seizure only to have nonsensical words come out of my mouth. Being upfront about my epilepsy and the symptoms I experience helps to shed away a bit of that embarrassment while also using hand gestures to indicate what I need or want.
Muscle Spasms or Rapid Eye Blinking
Muscle spasms and rapid eye blinking are sudden involuntary muscle contractions and are common during a seizure.
When you have no control over your body or actions it can feel embarrassing.
Whether you’re the individual with epilepsy, caregiver or bystander, avoid panicking. Instead, make every effort to remain calm, cool and collected.
Sometimes I feel a bit embarrassed when this happens. It pokes at my self-consciousness a bit. It took time to accept and adjust following my diagnosis, eventually turning the situation into an opportunity to alert those around me that I needed help.
It’s okay to feel embarrassed. Everyone feels this way at times. Even though we live with a condition that we have very little control over, we do have control of one very important thing and that is, our response.
Will we become a victim of unfavorable circumstances or use it as an opportunity to educate those who might not fully understand the complexities of epilepsy?
What is a symptom you find most embarrassing and how do you cope?