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The Stigma of Epilepsy…Your Husband Doesn’t Work?

Version 2
This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30.  Follow along and add comments to posts that inspire you!  

I don’t write about our journey with epilepsy much but when I saw the opportunity to bring attention to the stigma of epilepsy I jumped at the chance to share our story.   At the heart of the Live Happier philosophy is that life is full of ups and downs, joys and sorrows.  Epilepsy has been an awesome illustrator of that concept and reminds me every day….the only thing I am in control of is my response to life.

I knew he had seizures…he had told me about them. But I still wasn’t prepared for it when he had a grand mal in front of me.  It was 4am and I woke up to him convulsing and seizing next to me.  In panic, but trying not to I turned him on his side and lovingly told him it would be ok.  If you google what to do for with a seizure you will read (some very good information) about what to do when someone is having an active grand mal.  We have all see the TV depictions of seizures and the misnomer of putting something in their mouths so they don’t swallow their tongues (DO NOT DO THIS) but what no one talks about is the after the grand mal period…the postical period.  The period where he stops seizing and looks at me like I am going to chop him up into little pieces.  He can’t talk and he can’t understand anything I am saying and no matter how much I say, “it will be ok,..just relax…” he looks at me with terror in his eyes.  And then he tries to flee.  After exhausting his muscles completely through the seizure and having no muscle strength left—his brain tells him he now would be a good time to run.  So he tries to get up out of bed…he tries to flee…I try to hold him back…thus confirming in his brain that I am going to chop him up into a million pieces.

This dance of fleeing, fear, desperation and panic probably lasts for 10 minutes but for me, it feels like a lifetime.  Eventually, he gives up; I get him back to bed and he sleeps it off…only to wake up a few hours later to repeat the process.  His seizures usually come in 2s and 3s.  And then there is the recovery…usually, he sleeps all day and most of the next and then it is almost like his brain goes through a reboot and for a week or two he is just ‘off’ forgetting words, misspeaking, tired, frustrated and angry.  So yes, the seizure is more than the 3 minutes of the actual seizing…it is a roller coaster of emotions, as well as a physical nightmare. Fortunately, for my nearest and dearest these grand mals only happen 3-4 times a year but we never know when they are going to happen, we never know how many or how long it will take him to recover. And then he has what I call ‘mini seizures’ we have given up on counting these…but he has several a day each one causing bits of brain damage.

My husband has had seizures since he was 8 years old; and has heard all kinds of slams, frustrating remarks and stigma…which I am sure you will read about in the other posts on this Blog Tour. But I wanted to write about the stigma of having a partner with epilepsy.  My story, as his wife and our journey together.

For most of his adult life, he worked. And when we first met he was working. When he wasn’t working he was sleeping. Which left very little time for us. Right before we got engaged,his seizures went crazy after years of stress, and exhaustion it just wasn’t worth it to be working anymore. Fortunately, we had ways to make it work so he didn’t have to work. So we decided it would be best for him to quit his job and focus on his health.  Do we have the same lifestyle as many of our friends? No. Is it worth it? Yes. The number one question you hear at any gathering or social event is, “So what to you do?” or “So what does your husband do?”  I have come to hate this question.  Because when I say my husband stays at home because he has epilepsy people stare at me blankly or say “Wow, I thought most people grew out of that.” or “Oh, my dog has seizures!”

I know people don’t know what to say. I know our way of life is highly unusual. I am the primary bread winner and my husband is the ‘cabana boy’ as we lovingly refer to him..taking care of the house, and being a wonderfully supportive partner to me.  But the stigma we face is asked in a question I get at least once a week, “How do you deal with that?” people ask. “How do you have a husband who does nothing…doesn’t help…doesn’t contribute…doesn’t work?” I HATE that question.  Because to me, the answer is there is nothing to deal with.  I have an amazing partner, friend, and husband…no he doesn’t bring in money. But there is so much more to life than financial support.

He is the man who listens to my stresses, supports my business, loves me unconditionally and puts his health as a priority, so hopefully we will have a long, happy life together.  Financial support pales in comparison to that.  I know I can have a husband who brings in money through work….and I know that husband is tired, cranky, disengaged and at a higher risk of seizures.  I know I can have a husband who is rested, relaxed, and present to our life and who still has seizures…I would pick option B anytime.

Stigma by definition is a mark of disgrace, and yes, I see the pity in the eyes of those we talk about Doug’s epilepsy with, I see it in the quick change of subject or the pithy remarks, and I understand because there is fear there.  Stigma comes from a place of misunderstanding and fear. Epilepsy is scary…I wish we didn’t have to deal with it, and I don’t wish it on anyone.  AND I know epilepsy has made our marriage stronger.  It has helped us get crystal clear on what really matters.  It has helped us live intentionally each and every day.  Bottom line…it has helped us live happier.

One thing that helps prevent stigma is the use of empathy.  We are so fortunate to have friends and family who offer us love, support, and connection…the definition of empathy.  Brené Brown has an amazing, humorous video on empathy…check it out here.

 

AMBASSADOR1-e1432335538576The Blog tour continues for the month of June…

Be sure to check out http://www.epilepsy-theunwelcomevisitor.com/ tomorrow for more on Epilepsy Stigma.

And for more information visit http://livingwellwithepilepsy.com/

14 Responses to The Stigma of Epilepsy…Your Husband Doesn’t Work?

  1. Nancy, you and Doug our one of the best and strongest couples I know. I count myself lucky that I can call you a friend and that I have been able to learn from the love and devotion that the two of you share.

  2. Tim Haygood says:

    Thank you for sharing your story. As a husband with epilepsy I know how strong of a person you have to be to be married to someone with epilepsy. It’s not easy and I know I’m not able to help as much as I would like. Too much sleep is needed. I love your optimistic approach and your outlook on empathy. I think our stories are similar in that my epilepsy has made our relationship stronger. You have to know what is important in life and live every moment. Thanks again for sharing.

  3. Nancy Jane Smith says:

    Thanks Tim…I am amazed how helpful it was just to write the story and hear people’s comments. Of course, I was worried that people would judge me or us but it has just been a wonderful outpouring of love. I am sure my husband would say the same thing…he would like to help out more…and most definitely there are days I wish he could. But like you said it is coming back to what is important and remembering why I married him in the first place which was for him…not for what he does. Good luck with your journey. Take Care!

  4. Thank you so much for sharing your story! You and your husband are simply amazing, I can tell from the way you speak in your writing.. Thank you again for helping stand up against the stigma put those of us living with epilepsy 🙂

  5. It is interesting to find that the helpers (those writing the stories) are being helped by this Epilepsy Blog Relay. Everytime I read a post like yours, I am reminded why I started Living Well With Epilepsy in the first place.

    Thanks for your post,
    Jessica

  6. Tim Haygood says:

    I agree again with you. Putting it out there for others to read is so therapeutic. And it’s surprising how many people can relate to your story. A lot more than you would think.

  7. This was such a well written post. Speaking with others about how you choose to live your life, in part based on epilepsy, is so difficult. While I am able to work with my diagnosis, people still struggle to understand the other effects epilepsy has on my life.
    It’s so comforting to read the words of someone who doesn’t have epilepsy but still must fight it and the stigma surrounding it. Remembering you and others like you are out there brings me joy.

    Thank you!
    Leila

  8. Mindy Britton says:

    Your post is our life! My husband hasn’t been able to work for 20 years because of seizures. It’s very difficult when people ask him “so what do you do?” And your description of seizures is spot on. Thank you for spreading awareness!

  9. My husband just started having seizures in January. They are grand mal seizures also, he ended up losing his med card and his CDL and losing his good state job and benefits. It has definitely been a blow to our family. But he has found another job, that has been an incredibly supportive of him and the 2 seizures that he has had there. They have a good group of people that watch out for him and they call me immediately.
    I know that this is a unique situation and that not all companies will do this. It has been frustrating though for my husband to go from an absolutely healthy 37 year old to someone that has to rely on his wife and children to be with him as we have not got the seizures regulated yet. He is so independent that is hard to accept that he gets tired more easily, or he needs to let his body relax. Would I take this pain away from him? In a heart beat! Do I regret being in this position? NO! I love him and will stand by him no matter what.

    So thank you so much for you blog! It helps so many of us out here experience similar issues.

  10. You both are so brave! I am almost twenty years old and have had epilepsy since I was nine, I get all the time “oh yeah my dog has seizures” like it’s the same thing. Fortunately my seizures are very well controlled (I haven’t had one in two years) but you two truly are people to look up to and admire. I hope someday that I will find someone to love me like you love your husband. Thank you for your story.

  11. Your story makes so much sense to me. I met my boyfriend over a year ago. When we met he told me he “episodes”. They were what he called seizures. I was like “ok”. He has little seizures. Well I have seen so many that I lost count. Like 2 months ago. I thought he was just haveing a “episode”. So i pulled over. When I went to the passenger side he was in a full seizure. I admit i freaked out. But got myself together. Called 911. He was shakeing, lips turning purple. He was not stoping. When I arrived at the hospital. I was not sure whether he was alive or not. I just started to cry. Was told he had a grand mal. I reacted fast enough and saved his life. I always have that image in my head. I watch him like a hawk when im around him. Him haveing seizures has not changed how I feel about him. I dont see his seizures. I see him. I love him no matter what. Ty for sharing your story.

  12. You basically wrote exactly what my husband and I have been through and go through on a monthly basis. From the first Grand Mal to the Postical phase as well as that stigma and the pity looks. That dreaded question ” what does your husband do?” But you are so right! Financial support pales in comparison to being healthy and taking control of Epilepsy. And who doesn’t like coming home to a clean house and clothes. Thank you for sharing your story, I know that I am truly not alone!

  13. Just wanted to say that ur ALL amazing couples esp to deal such a devastating disease! Your all supportive of each other, and ppl out there need to know more about this and all sensitive issues. U are all my heroes and keep awareness alive!!

  14. Malea Cooper says:

    Thank you so much for this…I am writing to you through tears. Your husbands symptoms sound exactly like my husband, and for the first time since they started in 2006,when my first child was 9 months old, I do not feel alone. He has been told he is not an Epileptic and kicked out of a neurology practice because they could not induce his seizures in a hospital setting, but what you described is what happens to him, and I know all too well how real and scary it is for all of us. I finally videotaped one and the best doctors in Indiana say he is having some sort of episode, but it is atypical, and they do not know what is causing it or how to treat it. He nearly died when the first one hit at 34 years of age, and had to be revived. The fear and confusion In his eyes when he came to broke my heart. I have chased him down the street afterwards before, fleeing with the little strength he had left. He cannot work anymore, but I love him no less, and am happier with him, despite our struggles, than I ever would be without him. I wish you and your husband all the love, joy, and happiness in the world, but it sounds like you already have it.