Having epilepsy is hard enough, but it can be made harder when your doctor won’t believe you. Sadly epilepsy is still largely misunderstood and untruths run rampant about this neurological disorder. What’s even more unfortunate is that the medical community isn’t immune to these things like we would hope. It always saddens me when I am reading a post in one of the epilepsy support groups I am part of opens up about a doctor accusing them of faking or telling them it’s all in their head. I even remember a news story where a man died when the hospital accused him of faking seizures to try and get drugs and threw him out. So what can you do when this is happening to you?
1. Find an Appointment/ER Buddy
Think about who in your support circle you can trust with this issue. Someone who knows your history and knows you aren’t faking. Fill them in and have them start coming with you to where it is the medical professional is accusing you of faking. This could be a certain ER, your general doctor, and in some more rare cases your neurologist.
Why bring a buddy? First, this makes sure should you ever pursue legal action that someone else was present to witness this happening. It’s not just your word against theirs anymore. If your buddy is aware they can be ready with their cell phone to acquire proof of your mistreatment. The more evidence you have on your side that they aren’t listening or treating you properly the more options you will have.
2. Find a new medical provider
Sometimes this can be easily fixed by simply finding a new doctor. If this is an option for you I recommend you try this. If it’s a particular ER or hospital that is mistreating you try a different one in the future if possible. If it’s a particular doctor causing you problems it may be time to start searching for a new doctor or if you are limited on doctors in your area if the doctor in question is not your neurologist or specialist have the doctor specifically treating your epilepsy have a little chat with the uncooperative caregiver. Often if your neurologist finds out another doctor is causing problems they will make sure to straighten it out for you.
3. Ask for patient advocate or Chaplin
If it’s a hospital giving you problems you can ask for a patient advocate or Chaplin. Most hospitals should have patient advocates, but when I lived in Toledo there was a certain medical care company in the area that did away with them and Chaplin’s kind of took over that role.
What is a patient advocate? It’s a person that will stand by your side in the hospital and fight for you and your concerns to be heard. Let’s face it when things aren’t going well we sometimes don’t have it in us to argue with the hospital doctors. This is where a patient advocate can come in handy. They know your rights and will make sure you receive proper care. Unfortunately, not everyone knows they exist as it isn’t always well advertised. So don’t be afraid to ask for one!
4. File a Complaint
Sometimes the medical professional in question isn’t up to date on their information on epilepsy or sadly there are just some bad apples out there. This happens in any profession. The only way the employers can do something about it is if people report them. They won’t know a doctor isn’t treating their patients properly if no one anyone says anything. I myself hate filing complaints as I hate the thought of getting anyone in trouble, but if they treated you that way then chances are they will treat someone else that way too. At least this way you have done what you can to try and stop that. Heck in this day and age of technology you can easily post a negative review on the internet to make sure other potential patients know about your experience and can take that in consideration before choosing that doctor or facility.
5. Seek legal advice
If you have done everything you can to try and rectify the situation on your own and it’s really harming your ability to get proper health care to try talking to a lawyer about any options you may have. I am no legal expert and by no means can tell you what those options might be, but it might be worth looking into. If you have had your buddy there to back you up with eye witness testimony and hopefully recorded evidence as well you just might be able to do something.
I am deeply sorry if you have found yourself in this unfortunate situation. I really do hope you are able to get this mess straightened out and receive the care you need. I hope that this article has given you some idea of things you might be able to try to try and fix the situation. If you know of any other tips that someone might find useful in this horrible situation leave them in the comments!