Life from the Driver’s Seat: When Your Partner Has Epilepsy

Rear view of person sitting on low wall under cloudy sky hugging knees and looking out over riverI remember the first time I saw all the medication bottles in Mark’s cabinet. We hadn’t been together long, and I was curious to learn more about the medication he was taking. I asked him about them and he said they were for seizures. I didn’t quite understand what he meant by this, but he said “it” was under control, so I didn’t give it much more thought. I thought it was great he was willing to share such sensitive and personal information, considering it was early in our relationship.

Mark began to have seizures in his late 20s that did not respond to medication. Even though they are of the complex partial kind (e.g.,“smaller seizures”), when I witnessed one for the first time, it scared me. He wasn’t able to speak while it was happening, and he made strange sounds in addition to awkward movements with his hands.

Little did I know at that time the impact it would have on our lives. When epilepsy is under control, you don’t think about it. But when it is out of control, causing six or eight seizures a day, you can’t help but think about all the time.

The Impact of Epilepsy on Our Lives

Gradually, the seizures got worse until it impacted his work, home, and personal life. At work, supervisors did not understand his behavior and, at one point, asked him to take a leave of absence. He missed opportunities for advancement due to his employer knowing he struggled so much with seizures, and because of this his focus was impacted. At one point, I even contacted an attorney who said nothing could be done unless Mark was fired for having seizures.

Mark could no longer drive, meaning I had to do it. This impacted me so profoundly that I became resentful, both with our relationship and with epilepsy. To me, it was the thief that took away my normally laid-back and smiling husband and took away parts of our relationship. He began to withdraw more and played video games for hours at a time, struggled to talk about “it” and his feelings, and lost the ability to focus on our relationship and look forward to our wedding and life after.

It became hard for me to cope. I had few friends and felt no one understood. How could they? No one I knew what I was going through. I didn’t want to go out much with him to social events, as I feared the embarrassing attention a seizure might attract. I hate to say that, but it’s how I felt at the time.

Once we moved out of state, Mark got better medication and his seizures have since been controlled.

Looking back, there is a lot I would have done differently. I waited too long to get Mark support from a therapist for his physical condition and for his emotional well-being, and waited too long to get couples counseling to help us manage the challenging realities of life with epilepsy, for both partners.

Recommendations for Caregivers for People with Epilepsy

I recommend caregivers seek support from as many friends, family, and neighbors as possible and reach out frequently. I wasn’t as willing to reach out to the few friends I had as I should have been, even though I felt isolated and alone.

I also think it’s helpful for caregivers to find some respite through social outings. Going out to dinner, a movie, or bowling can help you feel connected and replenish your emotional reserves.

Pursue local resources that may be available to you as well. For us, a support group for people with epilepsy and their loved ones would have made a world of difference. With the internet at our fingertips, resources including message boards and local support groups are much easier to find and participate in.

The Importance of Self-Care

I recommend caregivers take time for self-care: good eating habits, consistent exercise, plenty of restful sleep. I have learned that the more stressful the experience, the more self-care is needed to maintain good mental health. Find ways to relax through deep breathing, meditation, massage, and stretching. It can also be helpful to find a creative outlet through art, writing, or crafts.

Both people with epilepsy and those who support them can feel overwhelmed, hopeless, and helpless at times.

As a caregiver, it can be easy to allow resentment, guilt, or compassion fatigue to set in, but remind yourself that epilepsy impacts the whole family. It’s no one’s fault, and it’s no one individual’s problem. Like your loved one, you need to be cared for and supported through this difficult journey. The more you take care of yourself and get support, the better the caregiver you are able to be.

Lastly, maintaining a sense of humor through the experience is important. Epilepsy can take over your world like an unwelcome visitor and seemingly become the center of everything. Find what tickles your funny bone and come back to it as needed. Laughing reduces your stress response, relieves tension, improves your mood, and can make it easier to deal with difficult situations (Mayo Clinic Staff, 2016).

In closing, remember to keep the faith. Both people with epilepsy and those who support them can feel overwhelmed, hopeless, and helpless at times. Keep looking for support until you find it—from medical practitioners, from friends, from your community. Remember to support each other as well, because you’re in it together.

Reference:

Mayo Clinic Staff. (2016). Stress relief from laughter? It’s no joke. Retrieved from http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456

© Copyright 2016 GoodTherapy.org. All rights reserved. Permission to publish granted by Christine McDonald, therapist in Raleigh, North Carolina

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Kaye

    Kaye

    November 14th, 2016 at 8:10 AM

    Why am i going to feel resentful if I know that ultimately they would do the same thing for me? This is what taking care of someone is all about.

  • Chris McDonald

    Chris McDonald

    November 14th, 2016 at 11:53 AM

    Hello Kaye! Of course our significant others would do the same for us. But when you are in the situation of caring for someone you love, it does become a focus of your life. Driving became an issue as it was hard to always be the one in the drivers seat. So think about it, long trips I was the only one who drove no matter how tired I got, renting a car= it was all on me. Of course it wasn’t his fault but it is difficult on caregivers when all the driving for two people is only done by one person.

  • Christine

    Christine

    November 26th, 2016 at 5:02 AM

    Thank you so much, Chris for writing your piece. I related to everything you shared. My husband (we had only married 3 months before) had his first cluster of severe tonic clonic seizures which have left him with residual effects. I too am in the drivers seat. Your piece is the first I have read that has really resonated with me. Cheers

  • Johnny

    Johnny

    November 14th, 2016 at 10:15 AM

    I have a friend whose spouse will almost make it two years without a seizure and then have another one so there is a real fear about her bring able to drive again. I know that both of them very much want that to happen but you know for the safety of everyone involved the doctor just will not give them clearance. You wouldn’t think that something like driving would cause that much stress on a marriage but these are two who have always been pretty independent of one another so it has been a big change for them.

  • Chris McDonald

    Chris McDonald

    November 18th, 2016 at 9:05 AM

    Hi Johnny. You are correct, it causes a big strain on a marriage. They really need support through this time. You sound like a really good friend to them.

  • Janet

    Janet

    November 15th, 2016 at 8:56 AM

    At 47 I was diagnosed with adult onset epilepsy. I had recently completed my Masters degree and had the job of my dreams. Now I could no longer drive or be left alone. I felt like I had lost a great part of who I was. Because of where the seizures are located there was a significant personality change I wasn’t aware of. It was close to 2 years before my seizures were under control. Now that I am aware of what my husband went through I am so grateful he was there. I had not realized how hard being the only driver had been on him until the day I came out of DMV with the reinstatement letter in hand. I was crying because I could drive again, he was crying because he didn’t have to drive ALL the time. I still don’t drive at night or too tired, so I am still dependent on him but we talk through things and openly express what we’re feeling regarding my seizures. Yes we openly say seizure cuz that’s what it is. Honesty, openness, and always honor yourself even if I have to wait for non necessary trips or he may have to drive at times he would rather not. When one spouse faces a health condition it effects the other so find a therapist, love each other with honesty and openness. Be Blessed

  • Chris McDonald

    Chris McDonald

    November 18th, 2016 at 9:07 AM

    Hi Janet. It is so devastating for the person afflicted with seizures to manage loss of driving and for the other half in the couple. So true, you need to be open and honest with your concerns with epilepsy. Congrats on being able to drive again! That is huge!

  • roxie

    roxie

    November 15th, 2016 at 9:00 AM

    You know there are a lot of selfish people out there who wouldn’t want to give up their own lives to help take care of another.
    But they would gladly accept that help if they found that they were the ones who needed it!

  • Cole

    Cole

    November 15th, 2016 at 2:29 PM

    It’s not like those of us who are sidelined with this are all that happy about it either. But it is better than not being here at all so when you look at it like that you realize that life is always going to be about a little bit of sacrifice and a little bit of compromise.
    And then you move on.

  • Chris McDonald

    Chris McDonald

    November 18th, 2016 at 9:09 AM

    Hi Cole. I agree, those with the condition are greatly affected. Life does involve some sacrifice and compromise for sure! I have been married to my husband 20 years and never gave up on him or us because of this condition.

  • Inez

    Inez

    November 16th, 2016 at 9:48 AM

    Is there any upcoming news about a cure or at least anything on the horizon that looks hopeful?

  • Chris McDonald

    Chris McDonald

    November 18th, 2016 at 9:11 AM

    HI Inez. I am not aware of any new treatments but I do know that medications are so much better now than when my husband was experiencing this. It really is not an easy condition to treat, there is a lot that the Dr.’s don’t know.

  • stacey

    stacey

    November 16th, 2016 at 3:06 PM

    Maintaining a sense of humor- terribly important, terribly difficult

  • Chris McDonald

    Chris McDonald

    November 18th, 2016 at 9:12 AM

    Stacey- you are correct! It can be hard to have a sense of humor but that is partly what got us through.

  • Laken

    Laken

    November 18th, 2016 at 11:24 AM

    After reading this it gives me a much greater understanding and appreciation for the hardships that so many couples have to face and yet I take the ease of my own life for granted far too much. I though, well if you are just having to drive this person here or three that is only a small convenience. I have not taken into account the fact that a diagnosis like this effects both members of the family, the whole family, and can really change the outlook on life and personality of the ones who are forced to deal with this daily. Thank you for opening my eyes to the whole picture versus only the small parts that I had once only considered.

  • Chris McDonald

    Chris McDonald

    November 29th, 2016 at 1:45 PM

    Laken- thank you so much for your thoughtful post! I’m so glad it has opened your eyes to the impact chronic illnesses can have on the whole family and not just the person afflicted. Take care!

  • Virginia

    Virginia

    November 19th, 2016 at 8:38 AM

    @Laken- great point. I don’t think that there are very many of us who have the ability to see things through such a wide angle lens. We only think about how this disease will impact the person who has it and not necessarily the rest of the changes that go along with it for everyone else in their lives.

  • Thomas

    Thomas

    November 21st, 2016 at 3:17 PM

    A support group can be a good way to let off some steam and find out what works for other families when they find themselves in the same situation that you now are.

  • Chris McDonald

    Chris McDonald

    November 29th, 2016 at 1:46 PM

    Thomas- I agree, support groups can be so helpful. It was so much harder to access in the 90’s.

  • Bethany

    Bethany

    November 25th, 2016 at 2:34 PM

    Thank you so much for having the courage to write this. My husband and I have been together for 19 years and I have never been able to express what you just have without feeling like a horrible person. He has never had his license due to his epilepsy, and I’ve always been the driver. It takes a toll, and no one has ever used the word caregiver with me before. It’s eye opening to say the least. Both of our daughters have recently been diagnosed as well, so our road has become a lot longer. Anyway, sorry for the babble, I just really wanted you to know this hit close to home and it was so necessary in our lives right now. Thank you!

  • Chris McDonald

    Chris McDonald

    November 29th, 2016 at 1:49 PM

    Hi Bethany. I am so glad you could relate. You are not alone! And I am so sorry to hear your daughters are afflicted. How awful. I pray that their seizures will be under control.

  • Emily

    Emily

    November 25th, 2016 at 2:49 PM

    I don’t really have words for this article…I was a stay at home mom and wife. We did pretty well with money too. I was only married 1 1/2 yrs when I was diagnosed with epilepsy. I actually still have my license too. All I needed was to try and find the rights meds….then I could get “me” back. I know he had to take over driving at certain times and grocery shopping, but I certainly never made him feel alone. I did let him know that I was desperately trying to take care of “me” first and then my children. I know he was scared about what was going on and that things would always be about my health issues. However, I wasn’t who he thought he was marrying nor his trophy wife anymore. I was an independent person who was dealing with trying to fit together pieces of the puzzle to a horrible medical crisis. I was finally diagnosed with epilepsy after he saw two grand mal seizures. Too bad though. He’d already been looking for divorce attorneys. I got the papers on my birthday. My Neurologist was furious and reminded him of his wedding vows. He also had my then soon to be ex husband monitored while I was hospitalized. My Neuro believed that he was poisoning me. My ex had been telling him that he thought I was on some type of drug. Obviously, my tox screen was absolutely clean (I’ve never even tried weed!) and also, I wasn’t being poisoned. That was 6 months ago and I’m now divorced living in a small apartment in a city that is still new to me. Oh, and I have no car because this single mother can’t work. So, anyone who’s disgusting enough to spend more than two seconds focused on how “their ” lives have changed, might want to stop and realize that it pales in comparison to what us who are battling the side effects every single minute deal with. I know I would’ve never given up.

  • Jill

    Jill

    November 25th, 2016 at 5:17 PM

    My husband has had epilepsy since 2005. I completely relate to this story as a caregiver. Of course I would do anything for my husband and be there no matter what. And as it is exhausting for the one suffering, it is also for the one caring for them. I too, went through a time of resentment, depression, anger at this debilitating disorder. It is scary to see your loved one go through something that ravages their body and mind. My husband has cluster seizures where once a month he will have 5-10 grand mal seizures in a 24 hour period. It doesn’t end there. After the cluster seizures, he will be out of it for days, unable to sleep, sore all over. He doesn’t get “back to normal” for at least a week. Not to mention his brain has to regenerate. There have been times I wished I could just run away and not have to deal with it. Until you are a caregiver yourself you will not understand. But you are right, going out with friends once in a while, talking about it, laughing about it, all helps with coping. We have many more good times than not, so we don’t dwell on the “episodes”. We just work to get through the next month, hoping there are no seizures. But if there is we deal with it and move on. Thank you for sharing your story, it is nice to no I’m not alone in the experience’s I’ve had.

  • Kim

    Kim

    November 25th, 2016 at 5:18 PM

    My husband has nocturnal tonic-clonic seizures. This began in 2010. It’s been interesting. I am curious as to whether other people have experienced significant personality and behavioral changes in response to medication. We had a very bad time with that. We are currently using CBD that I am producing myself.

  • john

    john

    November 25th, 2016 at 11:23 PM

    the best medicine is laughter, so here is some funny truth, the number 1 cause of seizures, a k a ,episode is stress, well stress was named wrong, its proper name is perspective, you need to change your perception , it wont cure , but it will suppress, just as laughter does, here is my perspective, 2 men are getting on a plane, one is scared of flying and has a rough trip, the second man just wants to get home to his wife and kids, he sleeps during the flight, the plane lands safely, It wasnt the plane it was the perception of the men, I have learned to change my perspective as i still suffer from epilepsy, with a wife and my son being 16 and my daughter 13, I work on my perception everyday, lol, I tried surgery and it did not work so now i accept i am gonna have episodes, so by working my perception i help reduce the number, hope it helps, john

  • Megan

    Megan

    November 26th, 2016 at 12:55 PM

    Thank you so much for writing this piece. I am also a wife, mother, and caregiver. My husband also has epilepsy and has not been able to drive or work since January. We have been together for over 17 years and started our journey a little over a year ago with finally receiving the diagnosis of epilepsy. Everyone’s journey is definitely different, however, I am so very grateful to read little pieces like this that touch on the other’s perspective. It is a struggle to remain focused and positive for everyone, but in the long run it is truly worth every happy smile and memory made. Thank you! Stay strong and Much Love! 💜

  • Mellon m

    Mellon m

    January 5th, 2017 at 6:24 PM

    I definitely can relate to this . After 18 years of marriage my husband started having seizures. No one knows why and we have been through everything to try to get them controlled. It’s hard , he did lose his job our main source of income and yes things got hard. I have learnt so much about the different types of seizures, medicines, surgeries. But it’s hard to see the bright side of life at times. I won’t give up trying to get his seizures stopped but it is a lonely road as many have no way of understanding what you go through.

  • Chris

    Chris

    September 4th, 2017 at 12:47 PM

    Be strong Mellon m, I hope things have gotten better

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