Epilepsy and Disability: The Silent but Loud Struggle

I used to bite my tongue and hold my breath. Scared to rock the boat and make a mess. So I sat quietly, agreed politely.I guess that I forgot I had a choice, I stood for nothing, so I fell for everything–Katy Perry

When you start to feel that epilepsy is taking over your life, causing you to sit in loneliness and silence, its time to take a break. My doctor felt it was best that I took a leave of absence from work and apply for short-term disability. Reducing the stress in my life would help him see what is causing frequent breakthrough seizures. My seizures are typically well-managed with 3 medications. With the elevated stress, I went from having 2-3 Temporal Lobe Seizures a month to 9-12 a month. If you are experiencing breakthroughs, there is another underlying cause for these seizures. In my case, it was stress. What I did not know is that I will be fighting a battle I never saw coming.

In order for me to apply for Short Term Disability, I had to be out of work. Following all of the procedures, my doctor sent over the requested information. After weeks of the insurance company dragging their feet, they came back to say “You have been denied”. Their reasons, the EEG did not show any compelling results, I was not fully disabled (I was able to walk and talk) and some other long list of things that made no sense.  Here I am, out of work, no income and hundreds of miles away from my home in Dallas. No income meant my health insurance would not be paid, I am unable to get meds or pay for any other necessities. I went from feeling a little bit better back to stressing the heck out. Remember, stress is what sent me out in the first place.

When expectations don’t run according to plan, you must be willing to change course, adapt your vision, and recalculate what’s needed to survive – Bishop TD Jakes

We have this illness that no one can see. Outsiders think it only matters if we are out on the floor having a convulsive grand mal seizure. The truth is, this neurological disorder that we face daily is real. It’s not just “in our head”. Epilepsy affects our mind, body, and spirit. It can sometimes break us if we let it. But as a friend of mine says “We must rise above it.” I thought to myself maybe the people on the “medical board” just don’t get it. Maybe they don’t understand seizures and that you must have seizure activity going on at the time of the EEG testing for it to capture anything. It can come out with no results and a few minutes after the test you can go into a full-blown seizure. With these racing thoughts, I decided to take the next step; educate them and file an appeal.

After researching the company that my job uses, I found they are well-known for denying seizure claims. It’s hundreds of cases where people were denied, even those who underwent brain surgeries. Clearly, there’s a prejudice against us. Undoubtedly, they follow the stigma that it’s just not that big of a deal. Little did they know they were up against someone who would not just give up.

In my appeal, I did not hold back. I laid on the table what an EEG was and how it works for people with Epilepsy. I gave a run down on how doctors appointments typically go. Doctors will sit you in the room and play 20 questions. “When was your last seizure? How long did it last? Was anything different from the previous ones?” When it’s all said and done, they either up your meds or send you on your way and hope for the best The crazy thing is, they will approve stress-related disability claims for preventative measures such as to prevent a stroke or heart attack. So why is it not okay for a doctor to put his patient out for a stress issue that is causing overuse of electrical signals in the brain? An electrical charge that can kill them with no warning.

The thing that stood out the most was, how does it prevent me from working? In my line of work, I have to talk to people 95% of the day. If a seizure occurs at any point in the day my vision fades, my speech is impaired by stuttering. The migraine following is unbearable. Correct me if I’m wrong but the brain is a VITAL part of life. Without it, there is no you.

After sending in the appeal, the response received; it will take 45 days.  Times got so bad I ended up shutting down Changing Focus Photography, sold my Sony DSLR camera and all the bells and whistles. Sometimes we have to make sacrifices to get by and in this case, pay for meds. But why should it even have to come to “just getting by”?

After returning back to Dallas, the disability company reached a decision. “Your appeal has been denied.” Why? Same reasons as before, you are not fully disabled. They proceeded to give me another outlet to over turn the decision. Okay, let’s keep fighting! It’s no longer just about me. It’s about us, everyone suffering from epilepsy or any chronic illness, the care-givers, family, and friends. We pay for this help and should not be denied the right to use it when needed. In the end, it was still denied.

You held me down, but I got up! Already brushing off the dust
You hear my voice, you hear that sound, Like thunder gonna shake the ground! Get ready ’cause I’ve had enough–Katy Perry

This is why we must continue to advocate. Continue to stand firm in fighting for what is right. I’ve talked with numerous people who tried to get help and were denied. In advocacy, we must continue the education, help those who want to know more about our conditions. I firmly believe we can break down barriers between the patients, healthcare system and any form of government that hinders us.

Understand I won’t ever give up this fight. I know I was called to serve a greater purpose.

With Love,
Whit
Epilepsy@changing-focus.com

0 thoughts on “Epilepsy and Disability: The Silent but Loud Struggle

  1. Jah! says:

    Whitney!!!!!!!!!! I’m sooooo proud of you!!! You make me want to fight with you!!!! You are definitely anointed, and you have a calling to help others near and far! I pray that God continues to use you to help His people!!! I know you won’t give up and I know you’ll stay strong, so I’ll say keep getting stronger! Luv ya!!!

  2. Christina Johansson says:

    WOW!!!! We are so much alike! I have temporal lobe epilepsy and I have tried just about every med in the book. My EEGs always come back negative. Yes, there is a stigma. I was even considering a blog about it also. Thank you for creating this site! Keep talking about it; we CAN make a difference!

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