This post is part of the Epilepsy Blog Relay™which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
Siblings are so often the unseen victims of epilepsy with it affecting their lives almost as much as the person with epilepsy. They are also the unsung heros of those living with the condition, so for this post today I look at how it affects the lives of those who are a sibling to someone with epilepsy and sing the praises of this superstar group of people. I dedicate this post to my own hero my little sister Steph.
Our story: Steph
The day I had my first seizure even as young as she was there was a shift in my relationship with my little (and only) sister. Those eyes that up until then only idolised me now watched me like a hawk, she was frightened, and that watchful gaze is something that even now I am 30 hasn’t changed. If there is a hint of me feeling unwell I can feel my sisters eyes burning into me, watching and waiting for the tell tale signs of a seizure so that she can be first there, the one to comfort and protect me. I have lost count of the times I have regained consciousness and she is sat beside me on the floor wherever we may have been like it’s the most normal thing in the world to be hanging out on the floor. She tells me that she doesn’t think it changed anything, because to her this is all she has ever known and she says that she thinks Mum and Dad shielded her well from it when she was younger. For her it was when the epilepsy returned that she really remembers things (I had seven years seizure free, I was 21 and she was 18 when it returned), she felt that it brought us closer because she understood it more as an adult and in turn wanted to protect me in any way she could. Whilst writing this Steph told me the most scared she has ever been was when I was pregnant and had a seizure and fell down the stairs at the tube station, she said it left her feeling helpless. She also added no matter how many times it happens that it never gets any easier seeing me like it but she knows I will always come out fighting.
She plays a huge role in Noahs life because she knows better than anyone that sometimes I just need sleep or I am at risk of a seizure and she has stepped in so many times to give me a hand with Noah but she says its never a chore because he is her nephew, sometimes without me even saying she asks to have him and it’s the much needed recharge I need. For me its peace of mind that Noah is with the other half of me (because to me Steph really is part of me) for her it’s the peace of mind that I get the rest so sleep deprivation doesn’t trigger a seizure. In so many ways she became the big sister, I need her to look after me.
I asked others to share their stories with me and this is a combination of sibling stories and parents telling me about younger children to see what the most reoccurring themes are in ways siblings are affected by the epilepsy, I will look at both the positive and the negative.
The first and most obvious negative is that the siblings have all witnessed seizures, and this is something that has affected all the siblings I have spoken to and obviously, all have said how distressing they found it and how hard it was especially the first time. The follow on to this is some went on to say that they felt their sibling with epilepsy got more attention and they were ignored, the parents I spoke to reported on how difficult it is to balance time between the two. IN younger children parents told me that the children saw the child with epilepsy getting time off school, being rewarded for being brave during tests etc and saw it as unfair and special treatment, this was something that eased off from those I spoke to when the siblings were old enough to understand why these things were happening. Another common theme was how difficult it is to live with somebody who is moody, aggressive or acting out of characters either because of the medication and/or seizure activity. Again this was more so a problem for young children, because they would wind up the sibling they would react and then both would end up in trouble. Epilepsy affects all the family in that arrangements are cancelled/cut short or affected and at least half of those I spoke to said they had been resentful of this at times. Surprisingly a large proportion of those I spoke to said their biggest problem wasn’t their sibling having a seizure but the constant fear that it would happen was what affected them most.
As I said I also wanted to look at the positives, because siblings play such a huge role in the lives of those with epilepsy. Siblings talked of opportunities that may have never arisen had it not been for the epilepsy, specialist nurses organising trips for families and so on. The praise heaped on the siblings by those with epilepsy was never ending, one parent summed it up perfectly and said “ I think it makes the siblings far more understanding, tolerant and empathetic towards/of other people” and this was something that was echoed by others. Almost everybody I spoke to spoke of how in many ways the epilepsy had made them closer and strengthened their bond, with those with epilepsy often stating they looked after themselves better in order to be well for their siblings. Those who were older talked as I did of how the younger sibling became the older carrying a level of responsibility beyond their years and it gave them a new respect for them and helped them become friends as well as family. The sacrifices made by the siblings helped those with epilepsy be more confident and calm. The major reoccurring theme in the positives was that the siblings never treated them any differently because of the epilepsy and on that I will leave the final word to my sister…“ With or without epilepsy you are my sister and that will never change. I love you for you.”
To all the siblings of those with epilepsy let me say THANK YOU, you are so often our biggest champions and protectors and we appreciate everything you do.
NEXT UP: Be sure to check out the next post tomorrow at http://www.epilepsydad.com/ for more on epilepsy awareness. For the full schedule of bloggers visitlivingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.