Epilepsy and Advice…

Over the years, I’ve been on the receiving end of more advice than you could shake a stick at! I love that expression “could shake a stick at”. Although the origins of the saying are many, it’s thought that it’s a reference to having more sheep than you could control with a single shepherd’s staff or maybe it’s a reference to George Washington being seen brandishing a ceremonial wooden sword over the defeated British troops. Whatever its origins, the phrase aptly describes the abundance of advice I’ve been given. Advice has ranged from “stop being so pathetic” to “just ignore it” and has included many other pieces of unsolicited wisdom such as “listen to your heart”, “listen to your head” and, my personal favourite, “just be patient”. The giving and receiving of advice is very dangerous territory, to my mind. Get it right and you’re a hero; get it wrong and you’re the devil incarnate. If you give advice, you have to be prepared that it may not be accepted or adhered to. It means you have to be able to have no feelings as to whether the advice is taken or not. And the decision of the receiver to act on or ignore the advice is indeed their right. 

If I ask you for your advice, it means I want to hear your opinion as to what you think I should do in a particular situation. It doesn’t mean that I’m necessarily going to act on it. Similarly, if you don’t really want my opinion then please don’t ask me for it. Don’t ask me what I think, then get mad because I express an opinion that may not be a popular one, or may be controversial. 

When is advice just an opinion and what exactly is the difference? According to the Oxford English Dictionary, advice is “recommendations offered with regard to prudent action” and opinion is “a view or judgement formed about something, not necessarily based on fact or knowledge”.

If I’m understanding that correctly, then advice is what I think someone should or could do in their situation; whereas opinion is what I think of, or what I would do in, that same situation. The two aren’t necessarily the same. 

Living with epilepsy is a tough gig. Sufferers like me have no outward signs, other than showing up with bruises, chipped teeth and blackened eyes every now and then. We know that when Joe Bloggs in the street sees those injuries he doesn’t immediately think “epilepsy”. I’ve been called a “junkie bitch” in the street before. Someone saw needle marks on my arms and made an assumption. His opinion of me was formed right there in a split second. I could have reacted angrily, tried to put him right, but instead my head dropped, my confidence ripped and my world shrank. He had no idea how long I’d spent in hospital and how I’d been restrained and how hard I fought the medics trying to give me an injection. Opinions can be brutal. They can be formed with no basis, no understanding, no thought process and no questioning; yet we are all entitled to them.

Living with some people’s attitude toward epilepsy is also hard. I do believe things are changing and stigma is lessening but it is definitely still out there. What I find hard, is the ignorant opinion that I should not (could not even) live a full life because I suffer from epilepsy. I find unasked for advice to stay home and stay quiet also difficult to deal with. Yet, over the years, I’ve had to accept there is a hardcore of ignorance out there. Fear of the inexplicable and no desire to understand. An immediately formed idea of what the eye can see, but not the truth behind it. 

If I stand before you in my bruised and battered glory after enduring the punishment my brain has inflicted on my body; what do you see? Do you see beyond the bruising? Are you willing to look? Or are you going to assume you know my story and advise me to leave the man who did this to me? Are you going to whisper behind my back? Are you going to discuss with your friends my “situation”? Are you going to bother to find out what that even is? Maybe it is a sad reflection of the world that we live in, that some people immediately think I’m a battered woman or someone with a drug habit when they see my superficial wounds. 

I’m lucky. Most, not all, but most of the people I come into contact with, can look at me and see beyond the deep purple shading, the scars on my face and the puncture wounds on my arms. Most offer no advice or opinion, just the words “I’m here if you need me”. 

I find it next to impossible to ask for help. It’s a weakness on my part. Sometimes, I find myself on the edge of an abyss and know it would be easier to allow the darkness to consume me, than to admit there is a problem. In those situations, I’m scared to speak of them for fear of consequences. I don’t want to be the cause of someone else’s worry, I don’t want to be a burden. I don’t want to hear the strain in their voice or see the pain in their eyes. So, I tough it out. As I’ve got older, I’ve found it harder to come back from the darkness intact. My fuse is shorter and my internal turmoil verges on intolerable. All compounded by the knowledge that the strain can bring on a seizure at any time. But, I don’t want you to know that the fear of that kills me a little every day. I plaster on the smile, but my words can be harsh. You hear the tone but don’t understand it. The tears borne of frustration come next. I can’t express adequately to you how I’m feeling. I can’t make you understand the pain I’m feeling. I don’t know how to ask you for help. 

My head and my heart are often in conflict. My patience sometimes knows no bounds and other times is non-existent. So, if you are offering me advice that includes those aforementioned pearls of wisdom, please ensure you also include the “how” part because, whilst I’m familiar with the theories you’re expounding, I’m darned if I know what to do with them!

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