Frustration

When it comes to epilepsy I have so many mixed emotions and some I have worked through but others I still struggle with. 

The one emotion that I just don't know if I'll ever sort out is frustration. I get so frustrated that epilepsy has been around forever and we still struggle to even control it much less cure it. I realize the brain is a very complicated part and I'm not saying people aren't trying to find cures or better treatments. But to see Rach and so many others taking medicines that have serious side effects, even making them sick in other ways and still not having seizure control is frustrating. 

Another thing that frustrates me is finding a good doctor is so hard! Some people would say it's just the area we live in but I disagree. I've seen several people online complaining about the fact that their doctor won't listen to them about how a medicine is making them feel, or that the doctor uses a one size fits all approach. I know we were very lucky with Rach's first pediatric neurologist but sadly right after Rach started having seizures again he retired and then the doctor that was treating her retired at the end of 2020. We're still trying to find the right doctor and again I'm very frustrated with what we're currently dealing with. 

The other thing I struggle with is doctors don't have a hard time pushing certain medicines that will make your quality of life deteriorate or even worse could possibly kill you or your loved one, but then if you question them at all they act like you just broke the law. Or if you make the mistake of asking about a more natural treatment plan they act like you don't take the condition seriously enough.

I guess the last thing I want to talk about that frustrates me is that there is still a stigma attached to epilepsy and I would love to see that gone. It really bothers me that people can't take the time to simply understand that people that suffer from epilepsy aren't possessed, they aren't contagious, they aren't insane and they haven't been cursed by some form of witchcraft. COME ON!!!!

People with epilepsy shouldn't have to feel ashamed or fear rejection. They shouldn't be made to feel like a drug addict because they have to be prescribed a benzodiazepine or that maybe they use some form of cannabis to control their seizures, in states where it's legal to do so. 

Can you tell I'm frustrated? 

Have you ever felt this way?

I would love to hear from some of you about the emotions you struggle the most with. Please share in the comments below.