When you are first diagnosed with Epilepsy it can be hard to know what to think. It could be overwhelming, cause confusion, make you afraid, and all sorts of reactions. When you first learn of this diagnosis it can be extremely hard to figure out how to navigate you new reality and what’s worse often it feels as if we must figure it out alone. So to help you cope with your new or maybe even old diagnosis here is how I made peace with my diagnosis in a way that lets me live a full life.
1. Create Your Own Support Network
You may feel like you are alone right now, but you don’t have to be. Try being open with a few close relatives or friends that you think you can trust to be understanding, open minded, and empathetic. Only you know who these people will be and it is okay to be picky. In fact, you should be picky. Epilepsy is often misunderstood and many people can be insensitive and cruel without realizing it. I relied heavily on a friend I met in Junior High and we are still friends to this day. She was the friend that understood, didn’t judge, pushed me out of my comfort zone, and most importantly knew what to do if I had a seizure. Having her in my life made me feel normal. The other was my mother for obvious reasons. The rest of my family was supportive but I relied more on mom for the support I needed on a bad day.
Is your family or friends not supportive or maybe even accusing you of faking? This is heartbreaking and I am so sorry. That must really hurt to not have their support right now. My suggestion to you is to try and connect with others in your area or online with a similar diagnosis. Facebook has a few epilepsy support groups and your neurologist may know of any local organizations or support groups that meet regularly that may be able to give you a bit of what you are missing.
Another thing to consider is many who accuse loved ones of faking are just grossly misinformed about what epilepsy is and what seizures look like. Many think it’s what you see in the movies when it is anything but that. See if they would be open to having a discussion with you where you present information about epilepsy to them. The Epilepsy Foundation is a great resource to use for this sort of thing. You can look up questions together. You can show them what seizures like. For help with this just see my post A Beginners Guide to Seizures. Of course, there is always the option of taking them with you to the Doctor’s office so they can get the information from a reliable source. If they don’t come around I am sorry and I urge you to find someone who will get it, even if it means making some new friends.
2. Find Your Escape
I am not going to lie to you Epilepsy is hard. There will be times that everything seems hopeless and that you may even wonder what the point of breathing is. Epilepsy and Depression sadly often go hand in hand. It can be isolating and if you aren’t careful you may find yourself so consumed with what you can’t do that you lose your ability to be happy. This is why you need to find your escape or what others may call your happy place.
A place or thing you can retreat to that makes your heart feel warmer and help you reconnect with who you are and can help you forget your trouble even if it is only for an hour. For myself I retreated to the world of books or writing a poem or story. While in these fantasy worlds I didn’t have to worry about seizures, medication, or doctor’s visits. It gave me a brief reprieve and if I hadn’t done that I may never have gotten through the hard times.
So what makes you happy? Is it a place, taking a walk, baking, scrapbooking, or whatever. Whatever it is that you enjoy doing or being at use that. Use that as your escape. Make it the thing where you are allowed to forget your crappy diagnosis and when the next seizure might strike for just a short while.
3. Have Something To Strive For
It’s important you don’t give up on your future. It’s good to hold on to your goals and dreams. I won’t lie to you and tell you it will be all honky dory, but you have to keep trying. It will be hard. In fact, you will probably have to work about 50 times harder than everyone else. You will face unfair circumstances and setbacks completely out of your control, but keep trying.
As a teen, I knew I wanted to write, have a family, drive, play in the ocean, do something with my life that meant something. For a while, it seemed it would never happen. My family went on vacation as a teen and I got to play in the ocean. My doctor may have disapproved, but we took precautions. I was attached to a flotation device and always in my parent’s sight so they could easily look up and see I was fine. My brother on a couple occasions and my friend I mentioned earlier on another were there in the water with me and I was safe the whole time.
My point is that just because you have been dealt this sucky hand in life doesn’t mean you can’t have the life you want. It may take you longer. You may have to take some extra safety precautions but you can do it. If an Olympic athlete was able to become a pro with epilepsy why not you? If Lil Wayne and Prince were able to make their music dreams come true with this diagnosis why not you. Don’t let this stop you. If anything let it be the reason you try harder!
4. Take it a Day at a Time and Be Ready
Lastly, you need to know it’s okay to have bad days. It’s okay to take a couple days after a tonic clonic seizure to recover. It’s okay to be grouchy some of the time. It’s okay to still try and live your life, but also be ready.
If you are going out to live life be sure someone going with you or you are meeting knows what to do if you have a seizure. If seizure control is a real problem for you it may mean being open with potential employers even though you aren’t legally required to disclose anything. This is a personal choice only you can make and be warned it isn’t uncommon to face discrimination in the work place after you have seizure their or if you choose to be open about it. Just know that if you can provide proof of discrimination in the US at least you might have grounds for a lawsuit.
Also be prepared for some of the more scary medical options out there. Be prepared to have a few tests run. Don’t be afraid to ask about surgical options or even dietary options. Medication isn’t right for everyone and there options out there. They may seem scary, but if at the end of the day your seizures improve or you find control isn’t it worth it?
Don’t be afraid to drill your doctor with questions and ask why they want to do something. If you feel your doctor isn’t listening to you then it’s okay to seek a second opinion. This battle will be so much easier if you have a doctor with a good bedside manner who knows how to listen to their patient.
This journey won’t be easy but it can be done. If you want to be open with your new or old diagnosis and help spread awareness check out some of our cute epilepsy awareness wear here!