Caring for a loved one with a chronic condition can be rewarding but often challenging, especially when seizures are involved, increasing the emotional burden. Witnessing someone you love experience seizures affects not only the individual but also those who watch. As the only person to witness my husband have three tonic-clonic seizures, I have journeyed through a storm of feelings, from fear to sadness to guilt, and I often feeling misunderstood.
Many times, when I have opened up about my struggles on social media, I have faced judgment. Some people have called me “selfish” or accused me of playing the victim. This post aims to shed light on the reality of baring witness to seizures, supporting the person through them, the trauma that comes with it, and the importance of validating the emotions of both caregivers and those they care for.
Understanding the Impact of Witnessing Seizures
Seeing my husband have seizures has really affected my mental health. Two of them happened at night while he was asleep. I usually know it's starting because he lets out a loud, guttural yell as his lungs contract and push out air, kicking off the seizure.
Watching a seizure happen is really intense and feels unreal. All I can do is make sure he's safe and won't hurt himself. These seizures can last from 30 seconds to 2 minutes, but it feels like forever.
Following the seizures, I experience daily flashbacks. They can be triggered by random sounds or when Phil delays in answering a question, making me anxious that he might be having another seizure. If he's in the garage and something falls, my heart rate soars as I fear the worst. Even our bedroom, which should be a place of safety and rest, triggers me, making it feel anything but secure.
When it's almost bedtime, my anxiety starts to kick in. The night makes my worries worse - what if he has another seizure? I start overthinking and spiraling, and before I know it, I feel so sick that I have to leave the bedroom and crash on the couch.
This anxiety doesn’t indicate a lack of love; it reflects the trauma I have faced. My mental health matters as much as his; this reality should not be ignored for either of us.
The Double Burden: Caregiver Fatigue
Seeing these seizures, and continuing to worry about his wellbeing, can feel like an uphill battle. The emotional weight is often exhausting. I frequently find myself torn between wanting to be a steadfast supporter for my husband and managing my own fear and fatigue.
I don't just see Phil's seizures and help him afterwards; I also make sure he's keeping up with his meds, feeling good every day, getting enough sleep, eating well, and resting enough... you know, all that stuff. The seizure is just one part of how it affects our daily lives.
Despite the love that drives my caregiving, the psychological toll is hard to ignore. Neglecting my well-being can lead to burnout, which would ultimately hinder the support I can provide to my husband.
Challenging Misconceptions: I Am Not Playing the Victim
It is crucial to address the misconception that I am playing the victim when I express my fears. Feeling anxious and scared is not a sign of weakness; it's a natural response to trauma.
When people suggest that my focus should be solely on my husband's well-being, it feels hurtful. Instead of judging my emotions, a more constructive approach would involve understanding the challenges faced by both the caregiver and the loved one in this journey. Talking about our experiences can lead to better awareness and support.
It's pretty funny, but my husband has actually said he's got the easier end of the deal since he doesn't remember the seizures and just feels a bit sore afterward. He isn't scared of it happening again and doesn't stress about going to sleep. He even admits that my trauma is worse than his in this situation.
The Importance of Acknowledging Shared Emotions
In the world of caregiving, emotions are complex. Both caregivers and those dealing with seizures experience trauma and fear. It’s essential to acknowledge that caregivers endure significant emotional, physical, and mental challenges.
Our feelings really do matter. When I talk about my stress and anxiety, it's because I'm genuinely worried and care a lot about my husband. Ignoring how I feel wouldn't just hurt me, it would also take a toll on our relationship.
Caring for Myself Means Caring for Him
Taking care of yourself is super important, especially if you're a caregiver or have witnessed something traumatising. Realizing that I need to focus on my mental health doesn't take away from how dedicated I am to my husband.
Honestly, by taking some time to recharge, I can actually give better care. When I sort through my own feelings, I'm in a much better place to give my husband the support and love he needs. It's a tricky balance, but it really boosts both of our well-being in the end.
Seeking Support: Finding Your Tribe
Connecting with people who get what you're going through can be super helpful. Finding a support network is really important when dealing with the ups and downs of caregiving. Once I admitted I was struggling, I joined a support group for advice and was happily surprised by how supportive everyone was.
I've found comfort in these groups where sharing experiences and tips is welcomed. These communities provide a safe place to let out frustrations and celebrate little wins. We're not alone in this journey, and reaching out for support is crucial for our emotional and mental well-being.
Embracing the Journey Together
When it comes to caregiving, both the caregiver and the person dealing with health issues go through tough times. Talking about what we're going through isn’t selfish; it’s just being real.
It's super important to create a space where understanding and compassion rule. Everyone should be able to share their fears and feelings without any judgment. By having each other's backs, we can build stronger relationships - not just for us, but for those we care about.
Caregiving is tough, and everyone involved needs to have their feelings respected. Let’s remember that taking care of someone going through health challenges is something we do together, and we all deserve the support we need.
I'm still journaling to sort through my feelings and get a better grip on my thoughts. Plus, I'm planning to talk to my GP to see what other support options might help with my mental health.
Regarding my husband and how he's coping - while these seizures have been incredibly hard to witness, my husband is thankfully doing well. Physically, he’s recovered quickly and has been able to continue on with life much as normal, which we’re both incredibly grateful for. That said, there are still some changes - he’s not able to drive for 12 months, and there are certain things around the house he’s limited in doing. Emotionally, he’s handling things in his own way. He has access to counselling support through our GP, but right now he doesn’t feel like he needs it. We’re taking things one day at a time, respecting each other’s processes, and trying to stay open and communicative as we navigate this new normal together.
Of course it’s going to affect you, he’s your husband and it’s a tough time!
But yes you’re being selfish! Typical of you tho. Spend less time justifying your behaviour and more time in therapy.
100% understand. Hubby has Type1 diabetes (only diagnosed when he was 37) and it feels so selfish to say it also affects me, but when he has a hypo, it’s me runnning around checking his sugars, finding suitable things to eat, checking he’s still conscious. Thankfully ones that bad have only happened a couple of times, but there’s always the fear at night if he wakes up because these ones usually happen once we’ve gone to bed. It’s bloody scary even when you’re not the one it’s happening to.