How to Cope with Epilepsy to Live the Life you Deserve

By Stacey Chillemi, Author and Speaker

Most people live in misery and are frustrated because they don't think they can improve. No one ever helped or gave them the help they needed to cope with their condition. Not their parents, their schools or the media… They are stumbling in the dark without a map, a compass or visibility. But life does not have to be like that for anyone with epilepsy or any other disability.

Determination and Despair: The Personal Upheaval that is Epilepsy

At the age of five, I was diagnosed with epilepsy. Growing up, I felt alone, fearful, angry, depressed and trapped. I felt trapped in a stigmatized world that I did not want to be in. I felt labeled and powerless. I woke up each morning fearing I could have a seizure and hurt myself.

But another part of me was determined to succeed in life. I had dreams, aspirations and hope to become a successful woman, and I decided to do whatever it took to get there.

My life was like a roller coaster ride. Whenever I moved forward two steps, I felt like my disorder knocked me back two steps. 

Stacey Chillemi, author of 20+ best-selling books and frequent TV/radio health expert

In college, my seizures increased from the late-night studying and the stress of getting good grades. There was one point where I was ready to give up. So I went to the library looking for answers. However, only a few books were written on epilepsy by doctors in medical terminology, so if you weren't a doctor, it went right over your head. It infuriated me.

So one day, I wrote an article for the epilepsy foundation asking people how they cope with epilepsy. They published it in their magazine, and to my surprise—three to four hundred articles came to my home. These people shared their stories and explained how they cope with epilepsy.

For the first time, I realized I was not alone. So many people like me dealt with similar situations and felt the same way I felt.

I read every letter and became inspired because if they can get through it, so can I.

I finished college and landed a big corporate job in New York. Life was grand, and then one day, I felt a seizure coming. So I looked around and tried to find a safe spot where no one would see me have the seizure. 

Sadly, there was none. I fell to the ground and had a seizure while I was conscious.

A producer saw me and stepped right over me, and kept walking. I was stunned. How uncaring and inconsiderate this man could be.

Then 30 minutes later, a co-producer released me from my position. I did not let it get me down. I walked out of there with my head held high and said I would be a success. I was determined to turn my dreams into my reality.

Stacey Chillemi books

I began my own freelance business and worked with some of the biggest names in the health industry. I also took those letters I told you about and wrote a book to help people cope with epilepsy.

Those letters changed my life. I created a daily regimen that allowed me to empower myself and not let my condition empower me.

10 Action Items to Confront Epilepsy

1. Overcome denial.

YES, I HAVE EPILEPSY. Denial is a way that helps people cope with stressful situations. It's a coping mechanism that gives a person time to adjust to a stressful situation. However, staying in denial and not facing the truth can cause more problems in the long run.

Many people in denial of their condition create a façade in their heads. They believe they don't have a problem and try to convince themselves that it will disappear. But, sadly, the problem doesn't disappear, and the condition can worsen or cause other conditions or even death.

If you feel stuck or if someone you trust suggests that you're in denial, you might try these strategies:

  • Ask yourself, "Why am I scared?"
  • Ask yourself, "What am I fearful of?"
  • Think about what will happen if you stay in denial and don't empower yourself to cope with this condition.
  • It's OK to express your emotions. However, if you don't want to tell anyone, create a journal until you're ready to talk to someone.
  •  Be honest and ask yourself if you're helping yourself by being in denial.
  • Speak to someone you trust.
  • Participate in a support group.

Have you ever taken a quiet moment to think about who you are on the inside? In our society, we are given roles. We have many roles, and you probably identify your roles. However, it is common for people to see themselves as having a certain identity, such as a husband, wife, brother, sister, colleague or employee. 

Some spend their entire lives building themselves around these roles. It's all they know because that's what was taught to them. Take those roles away, and most people would become lost and confused because they have little awareness of who they are. As a result, these people cannot define their life purpose, create short- and long-term goals, and define their inner spirit.

2. Accept your condition.

It's not going away, so accept it and move forward.

3. Self-love.

Learning to love ourselves is not easy and does not happen overnight. Loving yourself takes time, which you must work on each day. First, you need to get up each morning, look in the mirror, and like the person you see. Then, if you are unhappy with that person, you have to do something about it.

I have worked hard to change what I did not like about myself. It has taken me years of hard work to get to this point.

The first thing I did to help me on my road to success was to say aloud, "I am Stacey Chillemi, and yes, I have a seizure disorder." You need to hear yourself say there is nothing wrong with you because you have a condition. Then, absorb it into your unconscious and conscious mind.

Once you learn to strengthen your inner self and develop strong self-esteem, you will feel you can accomplish whatever you want. You must understand and honestly believe that no one can change you. Only you can change yourself.

4. Look at life from a positive perspective.

Don't be one of those people who say, well, there's nothing good in my life because I guarantee you there are many good things in your life.

5. Focus on your strengths.

Look at the positive strengths in your life.

6. Change your outlook.

Don't let your condition take control of you. Growing up, I always pretended that I did not have epilepsy. By doing this, I was only hurting myself. Accepting epilepsy into my life has helped me tremendously.

Over the years, I have released much of the anger I held inside myself and focused on other parts of my life. As a result, I have become stronger, and I am extremely proud of the person I have become in life. It would help if you did the same. It may take time to get to this point.

7. Have patience.

Remember, Rome wasn't built in a day.

8. Believe in yourself.

You need to believe you can do anything you put your mind to. If you believe in yourself, then others will believe in you too.

9. Have a tremendous amount of pride in yourself.

It would help if you accepted yourself and looked at life positively. Say, "OK, I'm not happy with the person I see in that mirror. I need to change, and this is what I will do about it." Don't say, "I can't." You can. Be proud of who you are. Be thankful for each day you have on this planet.

10. Hope is key.

The most important of all the ingredients you need to cope with epilepsy is hope. Hope is vital. Hope is the emotional and mental state that motivates you to keep living, accomplish things, succeed at any level and accomplish anything you put your mind to.

According to the "hope theory" formulated by positive psychologist Charles Snyder and his colleagues, hope gives people the will, determination and sense of empowerment that allows them to reach their goals.

Remember, everything takes time. However, you will get there as long as you are determined to become a better, stronger person with enough inner strength to overcome obstacles crossing your pathways.

You can do it! If I can do it, so can you.

About the Author:

Stacey was chosen as one of the Top 10 Entrepreneurs in 2023 at Apple News, displayed within a feature in Grit Daily! She is an entrepreneur, speaker, author, coach and podcaster of the show, The Advisor with Stacey Chillemi.

Stacey Chillemi has had over 20 best-selling books published. She recently launched her new books, "Empower Yourself and Not Let Your Conditions Empower You," "The Positivity and Gratitude Journal," and the latest version, "Epilepsy You're Not Alone."

Stacey has spent the last 25 years using her abilities to give back. She is on Epilepsy Patient Advisory Council, sponsored by Sunovion Pharmaceutical and Eisai Pharmaceutical. In addition, she does community volunteer work for H.O.P.E. Mentor for the Epilepsy Foundation, Volunteers and Advocates for the Family Resource Network: A leading provider of family support services to individuals with intellect, a Board Member of the Monmouth Ocean Community Impact Board, and Volunteer, advocate and service provider for getting FIT.

Stacey Chillemi has been a guest on the Dr. Oz Show five times, worked personally with Ariana Huffington, and has been on local news and numerous radio shows and podcasts. Healthline ranked her among the Top 10 Health Websites.


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