Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.
This week we meet Christalle, and we will highlight: EPILEPSY
Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!
Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband.
What Chronic Illness (s) have you been diagnosed with? Which one will you be focusing on today?
Epilepsy, Anxiety, Depression – I’ll be focusing on my epilepsy diagnosis today.
Let’s take just a second to look at some information on Epilepsy before we jump into Christalle’s Interview.
What is Epilepsy?
According to The Epilepsy Foundation Epilepsy is a chronic condition which is most known for recurring, unprovoked seizures. To be diagnosed with epilepsy a person must have two unprovoked seizures (or one unprovoked with the likelihood of more) that were not known to have a cause that is reversible, like alcohol withdrawal or very low blood sugar. The seizures may be caused by a brain injury or family tendency, but in most cases the cause of the seizures are unknown
The word “Epilepsy” does not indicate or prove anything about the cause or severity of a person’s seizures. In fact many people with epilepsy may have more than one type of seizure and can show symptoms of other neurological conditions as well
In some cases EEG (electroencephalogram) testing, clinical history, family history, and outlook can be similar among a group of people with epilepsy. In these situations, their condition will be defined as a specific epilepsy syndrome.
If you would like Information on how Epilepsy is diagnosed click here.
Now let’s get back to the interview!
Please share briefly what led you to the decision to become a blogger who focuses on chronic illness and also patient advocate if that applies to you.
I was misdiagnosed at the age of thirteen with hypoglycemia and properly diagnosed with juvenile myoclonic epilepsy at age twenty-five. Being misdiagnosed made me realize how uneducated I was about epilepsy. I didn’t even know what epilepsy was until I received the diagnosis… For over twelve years, I lived with epilepsy and had no idea what was going on with my body, and that’s because the general public is not properly educated about epilepsy. I now know 1 in 26 people will be diagnosed with epilepsy, and 1 in 10 people will experience a seizure in their lifetime. I feel it’s my purpose to be a voice for the epilepsy community, educate the public, and lead by example to show others a diagnosis of epilepsy doesn’t have to define or limit you.
Diagnosing a Chronic Illness can sadly be a VERY long process! For you, how long did it take for an official diagnosis? And did you have to act as your own lawyer to get a doctor to take what was going on in your life seriously and look for a diagnosis?
My first documented seizure was at age thirteen, but I was not properly diagnosed until the age of twenty-five. I remember having five major tonic-clonic seizures between the ages between being misdiagnosed and properly diagnosed. My memory is very hazy around the first time I was taken to the hospital at age thirteen … I remember having to undergo many tests for doctors to figure out what was going on with my body. I remember being checked for diabetes, anemia, and other possible causes. I think my mom was pretty adamant at that time on getting a answer, but after we accepted the diagnosis of hypoglycemia. I was a kid, so I didn’t have much say in the matter, and I certainly wasn’t educated about epilepsy at that time.
Chronic illness is just that, chronic. Please share with us how your illness (s) impacts your daily life!
I’m lucky in the sense that I’ve been able to gain some sort of seizure control over the past few years, but just because I don’t have seizures doesn’t mean I don’t have symptoms. Living with an invisible illness is difficult, because people can’t visibly see how ill you are. One on a daily basis, I: face mental challenges about my limitations, deal with anxiety, depression and constant fatigue, and feeling like an outsider – even within the epilepsy community.
Being chronically ill can take a toll on all kinds of relationships. Have you noticed this in your life? If so how has your health impacted relationships in your life?
I’ve lost many friends, due to having a chronic illness … I’m often tired and have to cancel, which I’m sure comes off as flaky to others. I also don’t drink alcohol, so people typically don’t invite me out to events that involve drinking. Since seizures are unpredictable, it’s difficult to know when I will and won’t feel up to going out or attending an event. I think a lot of people fear epilepsy, because they don’t understand the disorder. Even though I educate others around me about what to do in the event of a seizure, I think it’s scary and somewhat of a burden to many people.
Sadly, living with chronic illness can be life changing. Have you found that your life has changed significantly over the years of living with your condition? If so, in what ways has it changed?
Being diagnosed with epilepsy later in life was a blessing in disguise. I didn’t grow up being told. I couldn’t do something because of having epilepsy. I was always encouraged to go after my goals and supported in following my dreams. The sky was the limit! Even now, I don’t let my diagnosis get in the way of accomplishing or doubt that I can do something due to having epilepsy.
All diseases have different kinds of flare ups, and every one will exhibit different signs of flare ups. For you what signs do you know to watch for when a flare is coming your way?
Since epilepsy is categorized as a disorder, it’s a little different. I don’t necessarily have flare ups, but I do have good and bad days. Typically, my first indication is brain fog … followed by disorientation, weakness, and fatigue. My body temperature will also increase at times, so that’s usually an indicator that something is up. If it’s a bad day, I’m usually in the bed all day, unable to fully care for myself.
What do you do to treat your flares? Or to make your bad days better?
My favorite thing on a bad day is a quiet, cold, dark room. Anything that can stimulate my brain is too much for me on a bad day. I need to rest, let my body health, and try again the next day. If able, I also like to catch up on episodes of my favorite shows or watch movies, but sometimes screen time is too much for me to handle on a bad day.
Being diagnosed with a chronic illness can be very overwhelming. If you could give a piece of advice to some who is going through the diagnosis process, or is newly diagnosed, what would it be?
STAY POSITIVE! Dealing with a chronic illness is hard enough without constantly focusing on the negative aspects. That does not mean to acknowledge only the good or pretend the bad does not exist. It means count your blessings and understand how grateful you are, despite having a chronic illness. Life doesn’t have to be over, just because you’ve received a diagnosis.
Living with a chronic condition is hard, it just is! Especially because for the most part there are no outward symptoms that can be seen by others. If you could share one thing with the public about living with a chronic illness what would you want them to know!
Even though someone may look OK, it doesn’t mean they feel OK. As a person with chronic illness, you learn to put on a mask to others and downplay your symptoms. Be understanding and have compassion, because we’re all trying to deal with our chronic illness symptoms as best as we can
Where Can You Follow Christalle?