Fear of Permanence

A fear that I did not know existed within me.  I do not like change too much either within my personal life, but permanence terrifies me. This fear for me rises from anxiety with the idea that good and pleasant things will fall through. It also rises from a fear that I will not be able to change something I do not enjoy – but instead, find a way to make it mediocre.

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Epilepsy is permanent. Have you ever imagined waking up one day, knowing you will never get better? Imagine being told that at 19, just a few months into being diagnosed with something completely out of left field. There is no magic pill to erase it, just to tolerate it. There is no guaranteed surgery or interventions. All you have is hope. To hope it gets better, to hope it becomes tolerable, and to hope it will not be your downfall. Coping with the permanence of Epilepsy is exhausting. For some, yes – they do “grow out” of it and able to live a normal life; very common for childhood diagnosis depending on the type. Some live completely seizure free with medication. Some do have success with surgery. Then there are some that may have less seizures, but they still come. And for the unfortunate few, nothing helps.

Even if we are not actively seizing, we still suffer. Epilepsy does not end when the seizure ends. For myself, head trauma is included every single time accompanied by blackouts and lost memories. With each seizure the time to recover is longer and lack of memory worsens. Then let us not forget the pills that lessen these events – they slow down cognition processes and understanding. They too affect memory storage. Then there are the mental health side; both condition and medicine induced. Sometimes we lose ourselves for the sake of tolerable life.

This is permanent for most of us. This is permanent for myself. There is no reversal; my memory will not come back. Memories lost will need to be triggered and constantly triggered to reform them. Without medication my learning processes may improve, but will equally be hindered by seizure frequency. Perhaps the constant seizures would have a worse effect. My family has been permanently affected and opportunities are forever missed. This is our reality.

  • “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these” (source)
  • “The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population” (source)
  • “Epilepsy-related causes of death account for 40% of mortality in persons with epilepsy” (source)
  • “Neurologists say sudden unexpected death in epilepsy (SUDEP) is second to stroke as a cause of years of life lost because of a neurological disorder” (source)
  • Tonic-clonic seizures are an important proximate cause of SUDEP” (source)
  • SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).” (source)
  • Perspective wise: 47,055 people died in 2014 from drug overdoses of various types and 35,398 from motor vehicle accidents in the U.S. (source). Epilepsy takes 50,000 lives each year (source).

These are permanent facts we have to live with every single day. These facts have not changed and without support and awareness, will not see a change. All we can do is hope and confine in those close to us in our times of weakness.

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March 26th is Purple Day; a day in which we must raise awareness for Epilepsy. A day in which we must take a moment to realize that such a common phenomenon is underfunded and takes lives without notice. We deserve more than mediocracy.

Wear your purple with pride

 

 

 

Embarrassment and Humility: Taking Control

Epilepsy comes in many different forms and strike us in many ways. Some people have auras, which allows them to feel when a seizure is coming on. Some people, like myself, have no idea when a seizure is coming until you wake up in a hospital bed not knowing what day it is or who is around you. But something we can all to relate to on at least one occasion is having a seizure in public. No matter what type of seizure, it can be humiliating, embarrassing, or overwhelming for that person. We all have our own ways with dealing with these type of situations, but here are some tips, tricks, and methods to get you through the post seizure madness.

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Looking at our emotions

Some people may report feelings of embarrassment, humiliation, or feelings of being overwhelmed after a seizure. To help better ourselves and ease these feelings, we must understand where these feelings may arise. Embarrassment itself is a very self-conscious emotion. No one else will experience this emotion but you and not everyone will experience it in the same manner. Embarrassment usually arises from someone feeling as though they failed to act appropriately socially, a sense of guilt or shame, and a feeling as though their guard was let down and their pride was hurt. It tends to be triggered in social situations, like having a seizure in public.  It is also a very socially connected emotion.

In my opinion, having a seizure is a very vulnerable state. You lose control of your body, your thoughts, and your surroundings. You no longer can protect or shield yourself; you can no longer care for yourself and well-being. Your body is just there, on display, for some undetermined amount of time, without you having any control. This can be very overwhelming and trigger a range of emotions. But luckily, there are different ways to deal our feelings.

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Remember: Take Control

How do you take a control when you completely lost control of yourself in front of a crowd of people? People are social and emotional creatures, they will mimic what you project after a traumatic event more often than not. One way to take control is by changing the mood of the situation. One way to do this is by displaying confidence. People will ease their tension and divert attention when they see that you are aware of what is going on and show a level of competency. Everyone will have their own way of taking control of their situation and easing the fears of those around them; another example would be through laughter. While yes, why should you have to worry about how those around you feel; you will find that being able to break the tension and having a sense of control in the smallest ways will help ease your feelings of embarrassment. Even if you only start with taking control of your own thoughts after a seizure, in due time, you will be able to apply it to the masses.

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Laughter

Laughter is the best medicine While yes, there is nothing funny about having Epilepsy or a seizure, laughter can be used as a coping mechanism. If a seizure was to occur around friends or with someone whom you are close and comfortable with, try making light of the situation. I have heard some people say “yeah sorry, my brain malfunctioned” or “what do you mean, you do not pee yourself too?” While this can be very hard for some people to poke some fun at, especially early on in a diagnosis, some people find this a way to deescalate the tension and worry within those around them.

When people see you crack a smile or treat a situation in a relaxed manner, they also tend to relax – seeing it as not an emergent situation. They tend to stop trying to overcompensate for your feelings by being overly concerned and overbearing. Some people want their space after a seizure – a good way to make someone feel safe and give you that space is to make the situation light. This does not have to be directly through laughter of course, one could just simply explain, “oh this happens a lot, nothing new” then point out a positive in the situation. That person or the surrounding people will see that you are handling the situation in a positive way, therefore make it easier for them to feel positive about you.

 How to apply to self: You can apply these methods on a personal level to. Take a moment to lighten the situation from within whether it is through laughter, pointing out positives, or simply telling yourself “here we go again, I got this.” Be positive, be uplifting – you are doing amazing.

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Education

Education? Who is in the mood to give a lecture on Epilepsy and seizures after having one? Probably no one, but there are some beneficial factors for giving a brief synapse of your condition or type of seizures to those around you. Quite similar to what I mentioned in laughter, it helps people ease up and feel confident in your ability to care for yourself. It eases the tension and in return will help you feel less embarrassed or overwhelmed due to being moved out of the spotlight.

Have you ever noticed that nurses tend to give a sigh of relief when they know you have a history of seizures? They are able to make the mood lighter for you and give you the proper time that you need. Aside from the fact that it is probably less work on their behalf, they have confidence that you know what to do to care for yourself. This diverts attention away from you and allows you to reconnect with yourself. This is even more true for the everyday average Joe. If you can show off your knowledge, their attention will go elsewhere and ease the feelings of embarrassment.

 How to apply to self: Remind yourself, you know yourself and your condition best. You know what to do; you know how to manage your seizures. Boost your confidence through what you know. You are a smart cookie, and a tough one at that!

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Getting Answers

Sometimes we get embarrassed when we do not know how things were perceived. The unknown can be quite scary and in the realm of Epilepsy and Seizure Disorders, that unknown realm can be our best unfortunate friend. Finding answers gives us a sense of security and helps us feel calm. Sometimes after a seizure, you need to do just that. Ask what happened, ask who was around, do not be afraid to approach people. You may not see it in the moment, but they want to help – most just do not know how. They are willing to answer and be there for you. They are not passing judgement; although it may feel that way because we did something atypical, yet typical for us. Gain control by getting answers and making the unknown known. You will have a better sense of realizing how people actually feel and that the situation was not as bad as you think.

 How to apply to self: If you are uncomfortable with approaching people, ground yourself. Look at yourself, feel what hurts, see how much time has passed, think of the lease severe seizure you had. Try to answer your own questions by observation and feelings, give yourself that validation that it really was not as bad as you thought. Let yourself breathe.

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Moving Forward

This may be easier said then done for some. How do you just “move on” from having a seizure and becoming what you perceive as a public spectacle?  First, take a moment and breathe. Ground yourself to the present, remind yourself that you are okay. Collect your thoughts and feelings and when you are ready, move one. Literally and figuratively. Just get right back up and keep moving forward. Thank those around you for their help and support, reassure them that you are okay, and walk away like it never happened.

Now, this may require quite a bit of practice and the “fake it till you make it” theory, but there is no reason to linger on something that is not making you feel good. Let your mind move forward, do not dwell on what happened or could have happened, do not put all your focus on the seizure itself – at this moment focus on yourself and your well-being. You are safe, you are secure. This will also no longer make the seizure the focal point. When people see you moving on, they know it is safe for them to move on too. When people see your bravery, even if you must fake it at first, they will be brave for you. You have a lot more control than you think.

 How to apply to self: While even doing this on a personal level only may be difficult, just give it a shot. Let your mind go. Do not get wrapped up on focusing on the seizure and the event, focus on the now and go from there. Prioritize your safety and find comfort in knowing you are still here, you still have a pulse, you still have life left in you. You can get through this, you will get through this. Redirect your attention and focus elsewhere

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Forgive Yourself

You may not feel like you are mad at yourself or that you are blaming yourself, but on a deeper level, that just may be the root cause Even if it is not the situation for you specifically, still take the time to remind yourself, this is part of you – this is NOT you. Epilepsy and Seizure Disorders do not control you or your life. It may try for 5 minutes or maybe even 10-20 minutes, but remember, you are a fierce warrior and you will take your life and time right back and hold onto it longer than it ever could. We cannot control every aspect of our life, with or without seizures – unexpected things will happen, but if we can make peace with ourselves, we are one step ahead.

You are a Warrior.

Keep strong.

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Looking for how to handle with Seizures in Public?

Click the link below!

http://thestorminsidemyhead.com/2016/10/seizures-in-public/

 

Possible Precursor to Epilepsy

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There is not much of a surprise when you hear Epilepsy and Psychiatric Disorders are connected. People would expect that due to receiving the diagnosis or if there was a structural abnormality that may interfere with the brain’s normal processing. There has been a lot of research showing a clear comorbidity between the two. A thought I have always held onto and had not looked into further was if psychological conditions could serve as precursors to Epilepsy. A member reached out to me personally asking if I could do a little research which ended up dabbling into my own questions. I will present to you quick synapses and links to research articles that may make you begin to ask questions.


 

  • Schizophrenia-like Psychosis and Epilepsy: The Status of the Association

Source: https://www.ncbi.nlm.nih.gov/pubmed/9501741

Date: 1998 (yes, technically deemed outdated – but for reference purposes)

What is it saying: Epilepsy may be related to schizophrenia-like psychosis due to structural brain abnormalities (e.g. cortical digenesis or diffuse brain lesions). Seizures may modify the presentation pf psychosis and psychosis may modify the presentation of seizures.

  • Bidirectional Relation Between Schizophrenia and Epilepsy: A population-based Retrospective Cohort Study

Source: http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03268.x/full

Date: September 19, 2011

What is it saying: Incidence of Epilepsy is higher in those with Schizophrenia and Schizophrenia patients have a higher incidence of Epilepsy. Thus, the two conditions may share a common cause

  • The Secondary Schizophrenias

Source: http://onlinelibrary.wiley.com/doi/10.1002/9781444327298.ch9/summary

Date: March 08, 2011

What is it saying: Epilepsy may/can cause Schizophrenic-like signs and symptoms which can lead to Schizophrenia-like psychosis

  • Schizophrenia Like Psychosis in Patients with Epilepsy Case Report

Source: http://www.ucms.com.np/journals/vol2/SCHIZOPHRENIA%20LIKE%20PSYCHOSIS%20IN%20PATIENTS%20WITH%20EPILEPSY%20CASE%20REPORT.pdf

Date: 2013

What is it saying: Epilepsy and Schizophrenia are both due to altered cerebral functioning and their history is often connected. Focuses on generalized tonic-clonic seizures presenting with schizophrenia-like symptoms

  • Recurrent Schizophrenia-like Psychosis as First Manifestation of Epilepsy: A Diagnostic Challenge in Neuropsychiatry

Source: https://www.dovepress.com/recurrent-schizophrenia-like-psychosis-as-first-manifestation-of-epile-peer-reviewed-article-NDT

Date: May 03, 2010

What is it saying: Studies have been done on Schizophrenia-like psychoses in Epilepsy since 1950s. It has been well documented that Epilepsy may be associated with psychotic disorders but, less widely recognized that the relapsing psychotic phenomena may be the first and only symptom of Epilepsy. This case study was focused on two patients specifically with an initial diagnosis of Bipolar Affective Disorder and Schizophrenic Psychosis. Treatment began using more epileptic tactics and during a follow-up, patients were free of Epilepsy and psychotic symptoms.

  • Epilepsy, Suicidality, and Psychiatric Disorders: A Bidirectional Association

Source: http://onlinelibrary.wiley.com/doi/10.1002/ana.23601/full

Date: August 07, 2012

What is it saying: Psychosis, depression, and anxiety significantly increase before Epilepsy diagnosis and after as well as one year after diagnosis. This shows that an underlying pathophysiological mechanism seen in both that lowers the seizure threshold and increases risk for psychiatric disorders

  • Hospitalization for Psychiatric Disorders Before and After the Onset of Unprovoked Seizures/Epilepsy

Source: http://www.neurology.org/content/78/6/396.short

Date: January 25, 2012

What is it saying: The risk of developing an unprovoked epileptic seizure is highest less than 2 years before and up to 2 years after a first psychiatric diagnosis (includes: depression, bipolar disorder, psychosis, anxiety disorders, and suicide attempts). Higher prevalence with those having depression and psychosis.


Wait, what does this all mean?

While yes, this is open for individual interpretation to some degree – you cannot deny there is a strong correlation between psychiatric conditions and psychosis with Epilepsy. At times, it appears this may be the initial or only sign of Epilepsy and could serve as a precursor to an eventual epileptic diagnosis for some people. Unfortunately, there is a gap between psychiatry and neurology that may allow some people to fall between the lines to be conveniently pushed into one section or another. I believe that this is what also makes Psychogenetic Non-Epileptic Seizures (PNES) so difficult and avoided. What if PNES is a soft-name for a precursor to  Epilepsy? What if we can catch Epilepsy through psychiatric disorders before the onset of a seizure? For me, this has opened up a lot of questions and I hope it made you think too. If you feel as though your psychiatric diagnosis does not quite fit your situation, do not be afraid to question your doctor. If you feel as though your PNES may be more epileptic, again, question them. Of course, this situation may not be for everyone, but questions get answered. Don not be afraid, advocate!


What are your thoughts or opinions? Did this get you thinking?

Share in the comments below!

 

Coping with Epilepsy – Social Acceptance

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The Social Side Effects

Epilepsy affects many parts of our lives; friendships, family, work, school, relationships, and so on. There can be negative social ramifications such as losing what was once best friends, family distancing themselves, or coworkers and colleagues becoming hesitant when around you. Some of us deal with stigma in our daily life followed by shocked faces and funny looks. But there are also positive outcomes like finding new friends, building stronger relationships, and finding new opportunities that you never knew existed. I have recently written a post on self-acceptance of epilepsy and the journey it takes to get there – which can be quite long. But how do you deal when others are having an issue of acceptance? How do you cope with the loss of friends and the distance of family members? You will be surprised with how similar both roads are. Here are some tips I have learned along my journey.


Self-Acceptance

First and foremost, you must accept Epilepsy to a degree within yourself before you try to talk to friends and family about it. Of course it is possible to go ahead or simultaneously travel the route of personal acceptance and social acceptance but things will become easier if they are already accepted within. I often find topics to be easier when I understand them for myself. Even if you do not completely accept the idea of Epilepsy entering your life – at least begin the process of understanding Epilepsy or perhaps your process will start here.

Educate

As I said in my last post – education is key. Educate your family, friends, coworkers, and colleagues on Epilepsy and your type of seizures. This will help them gain confidence in your knowledge about you condition as well as giving them personal confidence on how to help you. People are terrified of the unknown – they do not like to be caught off guard and some do not like the feeling of responsibility that they did not ask for

  • Erase the Stigma: Education is also helpful in removing stigma. “You have Epilepsy; I am not sure if you can do that” – have you heard this before? This blank statement usually comes from people who do not bother to ask you about your Epilepsy or do not listen to you but rather hear the term Epilepsy and revert to what they know. There is a lot of information out there, but from personal experience I noticed people tend to become fixated on the worst case scenario. They will avoid giving you a chance at something or inviting you somewhere because it avoids a potential risk. While yes, in some cases this is the best way to go, but unless the risk is involving your life being placed in harm’s way, then vouch for your right to have a chance. Educate them so they know how Epilepsy affects you. Step by step, this will help erase the stigma we face daily. That person may become inspired and tell three other people “did you know a person with Epilepsy can_____” Because we CAN and we WILL break these walls – give yourself a chance and others will follow.

Reassurance

While the idea of consoling someone older than you such as a parent or caregiver or consoling a friend on your condition may seem funny; they need reassurance just as much as you do. Some parents/caregivers may place the blame of Epilepsy on themselves or feel that it is their fault. They may feel that if they did something differently, you would not have to go through this journey. They may begin to harbor guilt which can manifest itself into arguments or unwanted distance. It may be beneficial to sit down and reassure them that this is not their fault – it is a random circumstance. Do not forget to remind them that no matter what, you appreciate what they do – they are going through a hard time right along with you. This can become emotionally overwhelming for you – as you may not understand why they are emotionally all over the place when YOU are the one going through Epilepsy in the literal sense. Do not forget they travel this road too as they watch every step you make.

Communication

Always keep a clear line of communication. Communicate your feelings, your concerns, and do not be afraid to ask them about how they feel or what their concerns may be. Sometimes this can be an emotional experience – you may hear things that upset you or you may not know how to react. This is okay. It is better to have things said and try to work through it as a team then harbor feelings of resentment, guilt, and/or fear which can add stress that is not needed. This can be therapeutic to both yourself and the other person.

Grievance and denial

This may be difficult to deal with when it comes to family – even peers. Some people may not believe you at first – this could be out of their own fear and/or wanting to avoid the situation. Some may truly not believe you and see it as “attention seeking” and more of a behavioral issue. One of the hardest things you will have to do, but yet one of the boldest and bravest, is to sit with these people and explain to them what is happening. I know it may sound cliché or redundant, but have a serious heart to heart, let them know how this makes you feel and ask them why they feel that way. This may be something that can be easily worked out or something that time itself may have to work out. Know that just like you, family and friends will go through a period of grievance that their loved one’s life will be changed and acknowledging that difficulties are going to come. It is hard to watch someone go through a condition like Epilepsy where they can feel helpless at times.

  • My perspective: I remember when my brothers had seizures – way before I developed Epilepsy myself. I remember standing there feeling like I could not do anything and with my elder, younger brother being essentially non-verbal – I wanted nothing more to experience what he did. Granted, I may have cursed myself at a young age but I wanted to help him and help others understand what he was going through. Family and friends will go through these emotions as well – they do not know what they should/can do. It is going to be part your job to help them along and educate them. This can be done either by giving them pamphlets, links to support groups and blogs, having them come to neurology appointments, or simply talking about your condition with them.

Loss of friends and distance of family members

While I wish I could say this will never happen, realistically it could and is something to be prepared for. Epilepsy is a lot to handle on your own – there will be times where you need help. Some people may have very mild cases and may not need the extra reliance. But for those of us who will – friends and family may not always be the most understanding. Once they go through the initial shock of the diagnosis – some may decide to make their distance. This can be an emotional time as well as close friends and family members may become non-existent. If talking to them and giving them some education on the topic does not help them cope; unfortunately, you cannot force them to stay and you should not have to. This acknowledgement can be hard to cope with but remember this; you do not need people like that in your life. If someone cannot accept you for both the good and bad – they do not deserve to be in your life. A true friend and real family will never walk out on you. They will never degrade you and they will never talk down to you. You DESERVE better than that. You WILL find new friends and new support – you may become closer to some people who were originally distant. With every person who walks out, a new person will walk in. You deserve nothing but the best; remember that.

  • Friends that leave and want to return: On occasion this may happen; a good friend might take a hiatus and come back into your life expecting you to welcome them with open arms after they left you at a low point. I will say that I cannot counsel you on what to do – this is a personal decision. What I will say and recommend is you have an open conversation without judgement and keep an open mind. Everyone copes differently. Perhaps they rethought their actions or maybe they came to a point of acceptance. It is hard and difficult decision to make; but everyone copes differently. It is entirely your choice to let this person back into your life and no one should ever judge you for the decision you make.

Strength, Courage, & Positivity

 Another subject that may sound rather silly but does help a lot is staying strong and courageous throughout your journey as well as keeping a positive attitude. While you should do these things for you own self-acceptance – it promotes social acceptance as well. When someone can see that you have a control on your feelings towards Epilepsy – it gives them comfort and gives them courage to take on this journey with you. No one else can experience Epilepsy the way you do and everyone will experience it differently. If you can take it on with a positive attitude; it will attract the masses and give them strength and courage to stand beside you as well as give them hope. As a family member, friend, or caregiver – it can be hard to stay positive at times; especially when you are witnessing low points of someone you love. But the positivity you have held all along will shine through another person when you cannot keep your head up on those low days. You will have encouraged and built a strong support system on pure strength, courage, and positivity.

Social Acceptance

While the journey may be tedious and may have to be restarted with every new social situation – it is worth every step. You will find out the strength of your support system, friends, family, and caretakers. You will begin to understand others better and on a different level than before. You will also meet new friends and extend your support system. Each day, you will begin to knock the walls down of the stigma that surrounds Epilepsy and Seizure Disorders. With every step you take, you are one step closer to not only helping yourself, but everyone around you and the Epilepsy and Seizure Disorder community as a whole. You are a warrior. You are a fighter. It may be tedious – but you will get to where you need be. Promise.


Never Let Anything Stop You

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Here are some of my accomplishments despite the stigma and despite Epilepsy

  • Top left: I got accepted into a Leadership program at my college
  • Middle Left: I was a volunteer at a pediatric oncology clinic and became camp counselor at a pediatric oncology camp
  • Bottom Left: I currently work at a local hospital
  • Middle: My little family – my two beautiful girls and loving partner
  • Top Right: I was inducted into Sigma Theta Tau International – a nursing honor society
  • Middle Right: My first love will always be music. This year I finally had time to get back into it with a help of a close friend. I currently play French Horn for a local Portuguese Band
  • Bottom Right: I am senior in a BSN program to become a RN

Share your thoughts and your accomplishments! Together, let us knock down the walls of stigma and become one step closer to social acceptance

 

Acceptance.

 ←PeaceLoveAcceptance→

 

Something we all strive for as social creatures. Acceptance from peers, colleagues, and coworkers. We even strive for self-acceptance – for example an acceptance of a new condition or issue within. For some of us, coming to terms with Epilepsy can be a challenge. For some, this challenge is extended to family and friends while we struggle with accepting it ourselves. How does someone ‘accept” something they never asked for.


Education

I could never stress this point enough; education is key. It is the key to acceptance within social standards and within ourselves. Things become harder when you do not know the root and cause or how things will play out. For some of us, myself included, we never get the “cause” or satisfaction of knowing why Epilepsy decided to choose us – it just happened. But for some, they know – they have some understanding. While this does not mean one is harder than the other, educating yourself on either personal factors or possibilities can help ease your stress of the unknown. If you are newly diagnose and do not know much about Epilepsy and other Seizure Disorder, look it up! Educate yourself as much as possible. Never be afraid to ask your specialist a question or to rule out possibilities you come across – that is part of their job and you may think of something they could have overlooked!

Look up stories, check out credible sites, talk people who have been living with Epilepsy, join support groups – do anything you need to in order to educate yourself and get a better understanding. The unknown will slowly become the known and you will be one step closer to acceptance

    Be Honest with Yourself

At first, we may be a little bit in denial about the extent of our condition. We may not want to accept that it will/has changed our lives or the true severity of it. We may feel embarrassed or overwhelmed with everything going on – but we will not get through it if we cannot be honest with ourselves. This can be hard, very hard. It is okay to feel overwhelmed, angry and upset. It is okay to wish this has never happened. But be honest with yourself on how you feel and try to find out why. “Why do I feel this way?” It could stem from a lack of understanding or social rejection. It could stem from watching a close family member or friend go through it. You will never find an answer if you cannot be true to yourself.

It took me years to accept my condition entirely. Does this sound silly? Maybe. But it was not until I saw the impact of sharing my story – even if it was the tiniest bit of information, it still made a big impact for someone else. Only then did I realize I was not being honest with myself. I told myself I accepted it when I truly never did – I was afraid of the stigma. I told myself it was not big deal, when in reality it was. It changed my way of life, my friends, my support, and my interactions. I was in denial that it ever affected me at all; but every hero falters, everyone has a heart, and everyone feels – it will affect you in some way and that is okay.

Grievance

Grieving? We are not dying, but simply have Epilepsy. You are right – but this still can be an emotional and upsetting time when the diagnosis is given. You are right, it could be much worse – but let us have time to adjust to the changes, the constant appointments, the medication, the brain fog, and the stigma. Let us have our moment of sorrow for something we never asked to be placed upon us. We all grieve differently and we all take different losses with Epilepsy – a loss of independence, loss of the ability to drive or to work, loss of a dream we were chasing…it is okay to be upset.

More importantly, allow yourself time to be upset and time to let reality set in. You will not be able to accept something you harbor hate or dislike towards. Talk it out with family, friends, significant other, or even your doctor/specialist. If you need some extra help, go seek it – go to counseling if you have to, it is okay! Epilepsy and mental health go hand in hand more often than not. You will be surprised how many of us have mental health conditions alongside our Epilepsy, reach out to us – we exist.

Perspective

When you first get a diagnosis that may potentially change the usual flow of life – do not dwell on what is lost, but focus on what is gained. Yes, allow yourself time to be sad but then allow yourself to be happy. You may have met new friends, you may have a stronger support system, or you may finally have answers to questions about yourself that you have been afraid to ask. Perspective is everything some times and with any type of new diagnosis, try your best to keep a positive outlook. While yes, Epilepsy may be part of your life, it is NOT your life and it is not YOU. You are you, and you need to be the best you that you can be. Do not let Epilepsy stop you, but empower you. There are positives to this. Remember: You can still live a normal life, you just might need to do things little differently or take things a little slower. But life will go on, and you will too.

If you are struggling with keeping a positive outlook, I challenge you every morning or every night (or both!) to say three positive things about yourself and one about Epilepsy/Seizure Disorders. It can be small thing such as “I am alive, it is sunny, I have a home, and I did not have a seizure.”

Strength & Pride

Once you begin to look at things with a more positive outlook, you will slowly begin to find strength in new places and a new sense of pride. Your journey may test your limits but it will only make you stronger with each passing day. You will gain pride in every accomplishment, no matter how small or large – you were able to still continue on despite your adversities. Take pride in your journey, take pride in your strength and let your strength keep pushing you forward as it continues to help you grow.

Acceptance

Once you understand, once you allow time for your emotions to pass, and once you change your perspective – only then can you begin acceptance. Only then, will you fully accept your diagnosis for what it is and start to wholeheartedly accept yourself. Like I said, it took me years to get here; everyone will have a different time line, but you WILL get here. The more light that gets shed onto the unknown, the easier it is to accept and navigate through. Just take it one step at a time, there is no rush. If you need to stay a while on one step, that is okay – I will stand with you, we will get there. Just breathe, tomorrow is a new day and with every day, you are one step closer. Promise.


What Ultimately Helped You?

For me, it was the moment that I shared my experience with others, face-to-face, and gave them the confidence and positivity that I never received in the beginning of my treatment. I treated them in a way I wish I was treated and gave them a real life example of life continuing on. I was able to give them hope. It was in that moment I realized that I was not honest on how I personally felt, that I tried to ignore it as others have done when I tried to reach out, and that educating myself would only go so far. At that moment I made a promise to myself to be more accepting of my condition and use it help benefit others. Over time, I gained acceptance of myself.

Remember, acceptance does not mean you will not struggle. There is a lot that comes with Epilepsy/Seizure Disorders and yes, struggles will arise – but accepting those struggles is part of the journey. Accepting the good with the bad and always being honest about it is part of overall acceptance. And you will get there.


Feel free to share you journey to acceptance below and what helped you along the way