Learning About FND With @EmpatheticListener0309💜

Some months ago, when I made a post under the Epilepsy Awareness Day Event I was asked if non-epileptic seizures are also a part of purple day. The truth is, not only did I not know the answer to that question, I also had no idea what non-epileptic seizures were.

The person interviewed today played an avid role in educating me about non-epileptic seizures, and also encouraged me to take a course on seizure first aid. Even though, I am sure they do not know this.

And so with great pleasure, I welcome @EmpatheticListener0309 who helps us understand Functional Neurological Disorders better.

Thank you for your time and your efforts in spreading awareness, and making visible what has been labelled an invisible illness.

Question (1): What were the challenges that you had getting diagnosed with FND?

Answer: The most challenging situation I had faced with FND diagnosis is that my doctors thought it was Epileptic seizures for 22 years until a year ago when they actually looked at the bigger picture that my medication was not working.

Question (2): FND has been called the ‘silent illness’ by articles in the past, do you agree with this and why?

Answer: I do agree with that, unless you have it no one really understands what it is like to deal with and you get told “you don’t look sick” because it is not seen on the outside.

Question (3): Have you encountered stigma or prejudices from people who do not have or understand FND?

Answer: Relating it back to my pervious answer, there is a lot of stigma with invisible illnesses as society puts people in a box and categorises people with disabilities as just one which they can see (physical disabilities) as there is a lack of understanding. I have encountered this more than once, especially in employment and education.

Question (4) : To a person who has never heard of FND, how would you explain?

Answer: For me I like to make it short and simple with a little humour I say that my FND enjoys messing up my nervous system as my FND is mainly triggered by external environmental stress.

Question (5): What is the hardest struggle you’ve experienced living with FND?

Answer: I have only been diagnosed for 9 months to be honest. I think it is that people think it is “all in your head”. I have had to educate my grandma that these non-epileptic seizures are very much real and affect me the same as an epileptic seizure.

Question (6): When around people who are not aware you have FND, what are your biggest concerns?

Answer: I don’t think I have any concerns

Question (7): How would you prefer to be supported when experiencing the symptoms caused by FND such as functional seizures?

Answer: I would prefer to be treated like anyone else and when it comes to non-epileptic seizures the only thing people can do is let it happen and make sure I am safe.

Question (8): In your opinion, are the sufficient treatments and medical research for FND?

Answer: To be honest before my diagnosis I had no idea what FND was. I don’t take medication for FND (also treatments are different, depending on what country you are in, I am not based in America so I don’t know what the treatments are like there) However I haven’t needed to have treatment.

Question (9): What hobbies/passions do you have? What activities do you enjoy doing?

Answer: My passion is helping people. I am a practising youth worker in my final year at university. I enjoy drawing and writing. My passion is to make a difference in local youth in my city.

Question (10): Disability Support aims to provide a community to people living with different conditions, such as FND. Have you found a community of people who have FND in disability support? Or rather, do you think there is an importance of having one?

Answer: I think it is extremely important to have support groups for people with the same health diagnosis to ensure that people know that they are not alone.

Question (11) : Is there anything you would like to say/include?

Answer: I think what you are doing is brilliant. Keep up the good work!

Click HERE to read more about non-epileptic seizures. To participate in this interview series, fill out this interest form.

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Thank you for reading, have a good day!💜