“Life with epilepsy doesn’t come with a handbook. We write it as we go along.”
You’ve been diagnosed with epilepsy. Where do you go from here?
I know you’ve felt defeated inside with no tears left to cry since walking out of the doctors office clutching the minuscule scroll about your newfound friend – epilepsy.
By now, you’ve probably shuffled from doctor-to-doctor, trying to figure out why you’re having seizures and can barely pull yourself out of bed.
Now that you have a name for the unpleasant guest that’s arrived in your life, you may even be relieved that you finally have a diagnosis. I know… I was when I was diagnosed in 2008.
But looking back at my own epilepsy journey, I often reflect on one particular quote: “I wish I knew then what I know now.”
So, I’m going to unpack the contents of a letter to myself the day after my epilepsy diagnosis.
TIP #1 DON’T RUSH TO ACCEPTANCE
Question your diagnosis. Epilepsy is a diagnosis of exclusion, meaning all other possible medical conditions have to be ruled out by your physician. Could it be a brain tumor? Is this a result of a virus?
Too often physicians label someone with epilepsy because it’s the path of least resistance. They don’t know what’s wrong with you, and nothing obvious is showing up on your lab work, so it must be epilepsy, right?
That being said, I encourage you not to rush into acceptance. Here’s why: Studies found that as many as 20% to 30% of those with epilepsy may have been misdiagnosed.
The implications of that are huge. That means millions of epilepsy sufferers are living with undiagnosed conditions, some of which could potentially be treatable!
It’s also important to realize epilepsy is NOT a disease. It is a disorder, which means it involves a number of factors, including genetics, brain injury, or illness. In up to 60% of cases, its cause is unknown. Epilepsy is not a disease and cannot be transmitted from one person to another. It’s important to dig deeper with the help of a knowledgeable medical provider to try to find the underlying cause of your condition.
TIP #2 FIND A GREAT DOCTOR
Remember that you are not STUCK with the doctor that you were assigned with following your diagnosis. You have the right to find a different doctor if they are showing a lack of respect, or aren’t capable or willing to help you.
I have heard so many doctor horror stories over the years from my fellow epilepsy warriors – doctors who more-or-less kept their eyes on their watch and not on the patient, told them that they were over-exaggerating their symptoms, that it was all in their head, doctors who over-prescribed medications to the point of putting them in a drugged stupor, doctors who told them they needed to lose weight or began pressuring them into a therapy they may have not wanted or were not ready to consider – such as surgery.
If your doctor has said or done any of the above things, then don’t hesitate in finding a new doctor! Do not allow yourself to be taken advantage of! Do not allow your doctor to invalidate your illness!
You are not making it up, and it is not all in your head. Seek out a doctor who believes in epilepsy, is highly knowledgeable about the complexities of this condition and is familiar with the latest research.
Heads up: It’s not easy to find a good neurologist. Expect to do your homework and you may even go from doctor-to-doctor, but trust me, having the right doctor is worth the effort!
Advice: Visit healthgrades.com and search for a doctor catered to your condition. This website not only lists doctors in your area, but also provides star ratings, reviews and details about the doctor.
This is how I found my neurologist that has exceeded my expectations and together we work to fight my epilepsy.
TIP #3 IT’S GOING TO TAKE MORE THAN JUST MEDICATION TO FIGHT THIS
While researching, I occasionally run across “so-called” success stories featuring people who have either recovered completely from epilepsy or are successfully minimizing the amount of seizures they experience.
While reading their stories, I took note of a pattern: Just about every person used multiple methods to help them decrease or find freedom from their seizures.
Dietary changes are almost always mentioned. One of the biggest dietary therapies being The Ketogenic Diet, which is a high fat, low carbohydrate, controlled protein diet.
Many people reconstruct their lifestyle entirely. Exchanging an unhealthy diet for one that is more nutrient-focused. Doing deep breathing exercises, yoga and/or meditation to calm an overactive nervous system. Setting aside time to include light exercise such as a short walk to stay active. Being mindful to pace. They’ve become experts at stress management.
This was only a small portion of their overall treatment plan. In other words, they took a more natural, lifestyle-based approach to treatment.
Keeping in mind that there has yet to be a cure found for epilepsy and sometimes medication can only do so much to manage my medication-resistant seizures (Intractable Epilepsy), I know that I can always reach into my “Survival Kit” to help me manage my seizures as best as possible.
TIP #4 BE YOUR OWN ADVOCATE
Don’t be afraid to voice any questions or concerns you have. I know it might feel scary and even overwhelming, but it’s actually the only way you’re going to get the care you need.
You know your body and your preferences for treatment better than anyone else. If something doesn’t seem right or if you’re not happy with the options you’re given, you can always get a second opinion.
TIP #5 FIND SUPPORT, MAKE CONNECTIONS, AND SHARE STORIES
Don’t be afraid to ask for help.
Join support groups! There are times it can get a bit lonely and overwhelming, but there are so many amazing groups out there with people who truly get it & have a wealth of knowledge to share. Support is ready and waiting for you when you need it.
Facebook groups I’ve found to be most helpful and supportive:
Bonus Tip: Under the “Manage Notifications” section of groups, select whether you want “Highlights” or “Friends’ Posts” to pop up in your news feed.
It can feel like a lot of overwhelming information in the beginning. However, this way, you can take a look at it whenever you choose, and you aren’t bombarded with it the minute you open up Facebook.
TIP #6 EDUCATE YOURSELF
You probably have a lot of questions. It’s obvious that doctors are very busy. So, it’s important that you don’t depend exclusively on them for your healing.
Here are my additional go-to sites:
Bonus Tip: Don’t over-Google your condition. It can be very overwhelming all at once. When you Google something, you can accidentally find yourself stuck in the “worst-case-scenario” mindset and certain matters might not apply to you at all.
“Consider the source. If you use the web, look for an “about us” page. Check to see who runs the site: Is it a branch of the government, a university, a health organization, a hospital or a business? Focus on quality. Does the site have an editorial board? Is the information reviewed before it is posted? Be skeptical. Things that sound too good to be true often are. You want current, unbiased information based on research.” – NIH: National Library of Medicine
There are also a lot of support groups (refer back to Tip #5) that can provide great information and resources. I’ve learned a lot about my condition from epilepsy groups on Facebook which led me to become an advocate, blogger and founder of The Epilepsy Network (TEN).
By joining Facebook groups for your condition, you can learn from other patients who may be farther along on their journey than you.
This is immensely helpful and inspiring. A great reminder that you are not alone on this journey and one that instills encouragement to ask questions and interact with others who are walking a similar path.
TIP #7 LEARN TO TRUST YOUR BODY
As you learn more about your condition, you’ll know more about what triggers your seizures. You’ll start to understand what you need to avoid. Some peoples’ seizures are triggered by sleep deprivation or stress. Others, perhaps flashing/flickering lights. You’ll learn what is related to your condition and how to respond. It will take trial and error over time, but you’ll figure things out.
TIP #8 FOCUS ON WHAT YOU ‘CAN’ DO INSTEAD OF DWELLING ON WHAT YOU CAN’T
A diagnosis does not define who you are. You may have to make some adjustments, but you may also find opportunities you may not have had otherwise.
This is a journey that you did not sign up for. One you might question from time-to-time if you have the physical or even emotional strength to bear… but not only will you survive, you will thrive. You will become stronger than you ever thought imaginable. What seems impossible, you will make possible time and time again. So don’t give up on yourself. Even if you stumble. Even if you fall, you will get back up, dust yourself off and stand twice as tall.
Epilepsy may be IN your life but it does not OWN your life.
All my love,
Your future self