When I was a teenager graduating high school with uncontrolled epilepsy college frightened me. Was going to college possible for me? Could I have a full college experience? Was living on campus even an option for me?
I discovered that college was possible with my uncontrolled epilepsy, but my fear caused me to make some mistakes and I now have some serious regrets. Below I will share with you what you need to know so you can have the college experience every student who pursues higher education deserves.
Tip 1: Let Passion Steer Your College Major
When I was a teen I was so petrified of what might happen with a seizure in a future workplace that I let the fear dictate what kind of degree I pursued. This was a huge mistake on my part as it’s now a degree I never use.
Instead of asking myself what I was passionate about or even taking classes geared towards figuring out my passion I instead asked what work place would be best to have a seizure in? I came up with a doctor’s office. So I pursued and acquired a medical administration degree.
The problem…I hate secretary work. Some people might enjoy the paperwork, answering the phones, and talking to the patients, but to me it was boring. I hated all my classes and so when I finished my degree I never really pursued a job in that field. I went out on a few interviews but I am positive my lack of enthusiasm was obvious.
If I had slowed down, told my fear to shut up I might have begun pursuing a counseling degree much sooner. Unfortunately, I let that fear rule and I am still trying to obtain my degree that I actually want. It would have been a lot easier without 4 kids, but we live and learn and if you do make this mistake just know that you can always go back to school.
Tip 2: Go For the Full College Experience
Once again I let my fear influence my college decisions. I was convinced that because I still had seizures that I couldn’t possibly live on campus. I thought I would have to live with my parents and that it wasn’t possible to live independently. How I wish I had asked more questions.
Choosing not to live on campus at a big university is one of the biggest regrets of my life. Instead, I attended a dinky community college that fit on a street corner that I could walk to from my parent’s house. Most of the students were twice my age so there wasn’t much of a chance to meet those once in a lifetime friends you are supposed to meet in college.
I urge you to avoid this mistake. If possible really go for it. This will be a good way to learn how to live independently with your epilepsy. College is the perfect place to try and figure this out. You have support built into college and you can still choose a university near you if that makes you more comfortable. Don’t choose a university just because you can walk to it. Learning the bus system or even having a budget for uber isn’t a bad thing.
Tip 3: Educate Teachers and Your College Friends
To make sure you have a great experience at college you’ll want to make sure your teachers are informed about your epilepsy and know what to do. It helps to have a few of your friends to know what to do as well. When I was in college while I did tell staff at the college about my epilepsy I didn’t go out of my way to educate them.
I learned how big a mistake this was one day in one of my evening classes. I was doing my work when suddenly I was waking up in a hospital bed a day or two later. Apparently not only did I have one tonic-clonic seizure but I had a few. If one of my classmates hadn’t been a paramedic working on a career change I might have been in huge trouble!
By all means try and have the best experience possible, but still, take the time to educate others so you can stay safe. The educating may be a bit awkward but it will be worth it in the end.
In Conclusion, living with epilepsy and going to college is completely doable. If you would like some help with educating your teachers or friends about what to do if you have seizure check out my free printable brochure! Just drop your email and it’s yours! If you would like help on educating people on what your seizures look like check out my post about some of the more common seizures here.
Marriage is a wonderful thing and it has its ups and downs. Marriage is a bit like a roller coaster even in the healthiest of marriages. So when one of you has epilepsy it can make that roller coaster a little more rough at times. When epilepsy is brought into a marriage it comes with its own sets of challenges and it can take time for both people to adjust the new hurdles it has brought with it. So to make navigating this journey a little easier here my 5 tips to healthy marriage when one of you has epilepsy.
Tip 1: Have A Plan for Seizure Days
Marriage can be difficult to navigate without the occasional bad day with seizures so to help things to go more smoothly it is wise to have a plan in place. You never know when a seizure will strike and when one does you both need to be prepared. It would be a good idea to sit down together and put together some sort of plan for those bad days. You may want to include talking to their doctor as part of coming up with this plan. The doctor may have a few things you need to consider when you put together such a plan.
Tip 2: Be Patient and Graceful When Medication Side effects Become an Issue…
When you are married or in a serious relationship with someone with epilepsy it is important to understand that the side effects of medication can be worse than seizures themselves. The above video while telling you about the general side effects doesn’t really do a good job talking about how difficult these side effects can be for the person taking them.
When they say fatigue or larthagy I think of those times I would sleep for 72 hours after taking a new medication. When they say you might be a little dizzy I think of all those times I went to school looking like a drunk because I couldn’t walk straight I was so dizzy. When they say you might be depressed I think of all the times I was suicidal because I was hopping from one medication to another trying to find one that actually worked.
The person you care about will need your support as they search for a medication that works. They will need you to be understanding when that medicine keeps them in bed all day. They will need you to forgive them when suddenly that new medicine makes their mood unstable and suddenly they are angry or sad all the time. They need your grace and understanding and most of all they need you in their corner through the crap of it all.
Tip 3: Stay Educated On Epilepsy
When it comes to epilepsy there is still a lot that is not known about it. Brain research is severely underfunded so progress seems to be taking its time, but it’s something you should try and keep up on if you plan on being in a relationship with someone with epilepsy. Staying updated on the latest info can help you properly support your loved one. Some ideas for doing so:
Tip 4: Find Your Own Support Circle
When we are responsible for caring for someone it can be easy to forget that we too need support. Taking on the role of caregiver is hard and finding support can help you get through the tough times. It can be a great relief to talk to someone who you can trust about your struggles. A good support person or group won’t judge and maybe able to provide insight that could help improve your situation.
Tip 5: Never Forget What You Love About Them.
When you and your partner are having a bad day, remember why you love them. Is it their smile on a cloudy day? Is it the way say good morning each day? It is because no matter how crappy your day they can make you smile?
Any marriage will have its ups and downs. Any marriage has its share of sickness and health. What will help you two to stay together is whether or not you remember the little things and why you love them in the first place.
When it comes to dating when you have epilepsy it can be somewhat terrifying. How do you find the right person that will support you through your epilepsy and avoid having your heart shattered at the same time? Suddenly the idea of dating a douche becomes all the scarier. What if they are a real jerk about your epilepsy? Is there are any way to make the dating world a little less scary? As an epileptic who remembers how terrifying the dating world was before I found Mr. Right I am giving you my top 5 tips to making dating with epilepsy just a little bit easier.
1: Just Tell Them About Your Epilepsy On That First Date.
First dates are nerve-wracking and all about feeling each other out. They are about trying to figure out if that person is worth seeing again and honestly when you have a diagnosed seizure problem figuring out if they can handle that should be priority one. Hiding your epilepsy could lead to getting emotionally involved with someone that just can’t handle it. Finding out if they can handle it or not is definitely something you want to know on that first date. It’s better to find out and drop them before your heart gets involved.
In fact, I told my now-husband before we even met in person. It may sound cheesy but we are an eHarmony success story. Before I agreed to officially go out with him I told him online about my epilepsy. He scored major points when I discovered he not only didn’t have a problem with it but already knew about epilepsy. He knew exactly what to do if I had a seizure and even had one or two himself. So it wasn’t something that would scare him off. Knowing this about him made it easier to relax on that first date.
I will say some sources say if you are well controlled waiting till you are a few dates in so you can test the waters a bit is suggested. However, when I was dating I was not controlled and this was not an option for me.
2. Give Online Dating A Try
Before I met my husband I had this bad habit of meeting a slew of duds. Those guys gave a good flirty impression but ended up being douches for various reasons. Being epileptic meant I was limited on transportation and limited on ways to meet someone in person, so it was online dating to the rescue. This may sound obvious in this day and age where this only seems natural, but I urge you to research any dating app or service you choose before you use it.
Think of what you want out of this dating relationship. If you want something that could lead to marriage make sure the service you choose has that goal in mind as well. If you just want to have some fun there are services for that as well. Take a few minutes and figure out what dating services or apps will help you achieve what you’re looking for in a relationship.
For example, I chose eHarmony because I knew they were a service that helped people find long term committed relationships. I also liked the fact they offered background checks and gave first date safety tips to help safely navigate the online dating world. Using them I was able to find my husband and finally get past all the duds.
3. Make Sure You Have Your Seizure Safety Plan in Place
As you plan your first date or whatever date it is you are on make sure you have your seizure safety plan ready to go. Make sure your date knows what to do if you should have a seizure. This might be good to discuss online or over the phone before you meet and go out. Take time to answer any questions they might have and make sure they have at least a basic understanding of your seizures and what to expect during and after.
Also, take the time to let them know any triggers they might be able to help you avoid on your date. If for example, you are photosensitive you can work together to figure out a dating option that doesn’t involve any problematic lighting. This also might be a good time to discuss any transportation limitations you might have as well. If you can’t drive make sure they are okay doing the driving until the day you find control.
If you would like help with your seizure safety plan check out my FREE printable seizure safety brochure! It uses information taken from the CDC and Mayo Clinic so you can rest easy the information is accurate.
4. Don’t Let Fear of Rejection Stop You
Is it possible someone will reject you because of your epilepsy. Of course, it is. That’s a reasonable fear to have in this scenario, but people who don’t have epilepsy are also afraid of rejection. It’s something we all fear. If we let that control whether we date or not then we will never find that awesome person that we are meant to be with.
That person you are afraid will tell you no might say yes. Let’s be honest the worst-case scenario here is they say no, right? So they say no. It may hurt at the moment but you can conquer that feeling and start looking for the person who will say yes. If you never ask then you will be alone. You can’t meet someone if you don’t risk your feelings and ask.
In fact, in both in-person and online I was typically the one that did the asking. Each time it was terrifying. I would not have met my husband if I hadn’t been the one to initiate the online dating process in the first place. I would still be alone. It was worth all those bad dates, occasional embarrassment and hurt feelings to find him.
5. Education Might Be Key To Being With the Right One
We cannot forget that there are a TON of misconceptions and myths about epilepsy out there. Any negative reaction to your epilepsy could be due to some misconceptions they may have about it. Before you write anyone off take the time to find out what they know. Clear up any untruths they might have and try and gently educate them on what this really is. If in the end they still aren’t open to a relationship with you due to your epilepsy then it may be time to look for love elsewhere. Have faith there is someone out there that will love you epilepsy and all.
When you have epilepsy and live with the struggles it brings on a daily basis the thought of ever living an independent life seem practically impossible. There seems to be a mountain of obstacles standing in your way. How is one supposed to handle their epilepsy in their daily life and live a life of not only independence but a life that makes you happy too? I remember how impossible it seemed when everything was spiraling out of control and now I am happily married, have four kids, and have found control with my seizures. While I can’t give you control I can give you my top tips to living a happy life with epilepsy.
Tip 1: Don’t Let Fear Dictate Your Future
My biggest regret in searching for my own happily ever after was letting fear hold me back for so long. When I graduated high school instead of moving out and living in a dorm somewhere and majoring in something that I actually liked I let fear rule me. Instead, I went to a dinky community college and majored in medical administration because I figured a doctor’s office would be a good place to have a seizure.
I also let fear keep me from calling up someone who offered me a job while I was at school. I was too afraid to tell them I had epilepsy so I stayed in a minimum wage job at a grocery store where I was severely mistreated. I stayed at that miserable job for over 5 years because I was lead to believe that if I lost their health insurance my world would end. Every time I mentioned I wanted to quit gasps of horror quickly followed allowing fear to keep control.
I can’t help but look back and wonder if I might have my bachelor’s degree in a field I enjoy and a good career as well if I just pushed past that fear. Could I have had a normal college experience? What friendships did I miss? How many people have I not helped by letting fear rule me? Could I have had a place of my own? Could I have overcome my fear of the terrible bus system and found my own transportation instead of relying on my parents?
One of the best things you can do is to stop letting fear be a barrier. Instead, see it as a challenge to overcome. The bible tells us not to be afraid at least 365 times. That’s enough for each day. Fear is not of the Lord. Fear is a weapon that is used to keep you from your path. You will not find happiness if you let fear rule you.
Tip 2: Planning is Your Best Friend
First, let me be clear I am not a person that likes to plan. I have always been more of a go with the flow person. Enough to drive my husband and friends crazy. They ask what I want to do I would shrug and respond with whatever. My hubby asks where we should eat I again shrug and say I don’t know. It’s enough to drive anyone besides myself crazy.
So this was something and is something I have to force myself to do. Planning is key to achieving that life you want for yourself. So sit down with pen and paper and write down what you want your life to look like. What things do you want? My list was something like this:
find seizure control
have kids? (This was up in the air for a while before baby fever hit)
have a dog
have a career
move out of my parent’s house
All of these have taken planning. I began asking more questions about my options at doctor’s appointments and began to let doctors run more tests. I asked my doctor and others who had seizures if having kids was possible. I was told with proper planning it wasn’t a problem. They put me on folic acid just to be safe. Folic acid is often used to help prevent birth deformities that could be caused by seizure meds. I joined an online dating site and eventually met my husband.
All these took planning. I thought out worst-case scenarios and came up with safety plans to keep me safe. I told my husband on our first date about my epilepsy. To my delight, he didn’t need the seizure talk as he already knew about them and didn’t care I had epilepsy. He knew what to do. I quit that miserable job, went back to school, and found a better job that treated people with dignity. I told employers upfront about my epilepsy after I was hired. I didn’t give this info out in interviews when I was hired because of my epilepsy for a job I wasn’t qualified for. Instead, I told them on my first day and told them what to do if I had one.
Because of life and having babies I have not quite finished my bachelor’s degree. I often whine, complain, and at times lose hope. We are trying to sort out a hiccup now that’s keeping me out of school, but I still want that career I let fear keep from me for so long. I know one day I will have it as long as I don’t let fear get me back in its icy grasp. You can have what you want to with determination and planning.
Tip 3: Practice Gratitude Daily
It can be hard to see what’s so great about life when you struggle with epilepsy. It is so easy to be sucked into the darkness that is depression and other mental disorders. All you want is to be happy and you become so focused on what’s wrong that you don’t see what’s right. When epilepsy sucks you into depression it’s a bit like seeing the world through a funhouse mirror. Your view of life is distorted and you just can’t see the positive anymore.
Good news is that your brain can be trained to think more positively so you aren’t sucked into that depression as easily. A way to do this is to keep a gratitude journal. Write down 3 or more things each day you have to be thankful for. This forces you to see the positive in the most hopeless of times.
They don’t have to be grand things. It can be as simple as a sunny day. That you have clothes on your back and a roof over your head. It could even be as simple as your still breathing today. Practicing gratitude can be a powerful tool for training your mind to see the positive and allowing you to finally be happy. Even when it seems hopeless.
Tip 4: Seek Help From A Therapist or Life Coach
Epilepsy can make mental illness a very serious barrier to a happy, independent life. One of the best things I ever did was to seek the help of a therapist. When depression becomes a serious problem and I can’t kick it on my own I call my therapist and see her regularly till I am better.
There are numerous kinds of therapists and life coaches. I chose one that would respect my wishes to not medicate for my depression. As someone whose major has a strong emphasis on psychology, I decided I wanted to avoid that route and use other methods that would help retrain my brain. It has been a great route for me. However, if medication is something you need to conquer mental illness that is nothing to be ashamed of. My path isn’t right for everyone. Just like there is no one treatment for epilepsy there is no one treatment for mental illness either.
Therapists and Life Coaches come in all flavors. If you need the extra help I strongly encourage you to find one that suits you best. Once again overcoming the fear of asking for extra help can be a life-saving step. It changed my life for the better when I needed it most.
Tip 5: Lean on Prayer and Faith
Last but certainly not least is prayer and faith. Maybe you roll your eyes at this one or this one annoys you because you don’t have a faith or don’t see how your own faith could help. When I say lean on prayer and faith I am by no means trying to imply that with enough faith you’ll magically stop having seizures. That is just dangerous nonsense. By no means, I am trying to strengthen the myth that epilepsy is caused by demons. That also is dangerous nonsense.
What I mean by this is that prayer and faith can give you the strength you need to get through each trying day. When I was first diagnosed I had already walked away from my faith after a year of ruthless bullying at the hands of my peers so I tried to go through it on my own strength. Epilepsy brought me to my knees. I couldn’t do it on my own strength and epilepsy actually brought me back to my faith.
Now, this doesn’t mean it suddenly got easier. It was still as hard as ever. The difference was I somehow had the strength to keep going. I eventually found the courage to do the testing for brain surgery. Something that had petrified me before. I suddenly had strength to push through my fears. When my strength gave out God helped me up and helped me to keep going. There is no doubt in my mind that if I hadn’t leaned on God I would not be here today.
Prayer: Dear Lord, Help me to push past fear. Give me the strength to get through each day. Hold me during the hard times. Bless those who help me during my seizures with wisdom and a caring heart. Help them to know what to do when I am unable to tell them what I need. Help me to take the scary steps I need to take to live a happy life with your wisdom and protection. In your name. Amen.
It may seem hard to believe now but you can have a happy life. You just have to be willing to fight for it. If you have any tips to achieving a happy life with epilepsy leave them in the comments below to help others like yourself. If you are tired of having the seizure talk with people check out my free printable brochure with all the info they need in one place taken from the CDC and MAYO clinic. To help spread awareness check out my epilepsy swag shop on the menu at the top!
When the days get warm it’s only natural to think of swimming as a fun way to cool off, but is swimming safe when you have epilepsy? Should you avoid it or are there precautions you can take? What about water sports? Are these safe or do they have added risk? I know as a teen with uncontrolled seizures my parents were always worried when I wanted to do something that involved water and swimming. So in this post, I will do my best to help you get the information you need before you go swimming this summer.
Is it Safe to Swim?
You may be wondering if it is safe for you to swim? This depends really on the type of seizures you have, where you will be swimming, and if you are planning on any water sports. We’ll go through it all here, but in short, if take the proper steps to create a safety plan before you swim then you should be able to swim.
What Types of Seizures Do You Have?
It is important to know what kinds of seizures you have in order to come up with a proper safety plan. If for example, you don’t lose consciousness during your seizures then you may be perfectly fine swimming on your own. If on the other hand, you do blackout during a seizure you will need at the very least a swimming partner to make sure you don’t drown should you seize while swimming.
I for example as a teen had all kinds of seizures, including tonic-clonics. If you are unfamiliar with what a tonic-clonic is check out my post: A Beginners Guide to Seizures. So I swam in view of an adult I was with, if in dark waters I was attached to a floatable device, and I tried to swim with a friend. This kept me safe while swimming. I knew someone would be able to get me out of the water if I had a seizure.
The Difference Between A Pool and Open Water…
When planning swimming safety with epilepsy it is important to think about whether you plan on swimming at a pool or at the beach. Why? It’s important because there is increased risk in open water. If you slip under the water it will make it harder for someone to find you and keep you from drowning. In a pool, it’s easy enough to see a person in distress and quickly do what needs to be done to keep them safe. So if you plan on swimming in open water make sure to wear a life vest or have something like a boogie board attached to you at all times. Also, make sure someone swims with you so that faster action can be taken. Open water is often dark water and if you sleep beneath it could be very difficult finding you in time.
Also when considering these two different options also find out if the place you are going to has a lifeguard on duty or not. If they do before you swim be sure to let the lifeguard know of your condition and any action steps that might need to take should the worst happen. Having a copy of your seizure action plan with you will aid in this conversation.
Epilepsy and Water Sports…
While many water sports such as water skiing or water volleyball should be safe for you to play in the water there are a few that should probably be steered clear from until you find some control with your seizures.
Scuba diving, canoeing, and kayaking all have a higher risk of drowning for those with epilepsy. All these you could easily become trapped underneath the water and not receive the help you need should you have a seizure in the water. Scuba diving you are deep underwater and the risk here is just too great if you have uncontrolled seizures. I understand what a major bummer this is as I was unable to scuba dive when on a cruise as a teen. Kayaking and Canoeing are considered dangerous because you can become trapped underneath an overturned kayak or canoe during a seizure. If in doubt about a water sport ask your doctor!
Whether it is safe for someone with epilepsy to swim in water or not is really a complex action and the answer once again will differ from person to person. It is best to always discuss any worries or questions you have with your doctor. For more detailed information on this topic check out Epilepsy Society. Their information on this topic was very helpful in writing this post. For help putting together information on what to do if you have a seizure check out my FREE printable seizure safety guide!