Harsh truth I thought long and hard about writing this post. Namely because I was concerned about peoples reactions as its brutally honest and blunt, I make no apologies for this. This isn't to shame anyone but to highlight some comments made which show the lack of understanding of both epilepsy and epilepsy in pregnancy. Shockingly sometimes the worst comments have come from those closest to those with epilepsy. Did you really just say that? When I asked for peoples experiences I was shocked at how many people came forward and even more shocked at some of the comments. Out of respect for those who have told me of their experiences I have made all posts anonymous: 1) "Don’t take your AED's, you should have a 'natural' pregnancy and not pollute the baby."
2) "Take your meds all in one go". When not managing to take them in morning due to sickness. (note: this is dangerous and not advised!) 3) Doctor: " We don’t see many people like you" This left Mum to be feeling like a different species. This is a medical professional who should know better. 4) From one persons family, "You're stupid for having this baby, you don’t need kids" 5) "Why have children if you can pass on the 'gene'. Its being selfish". 6) "Why didn't you stop having kids after the first one?" 7) "I can't believe you take (insert meds here) whilst pregnant. I would never do that to my child". Yes an opinion but not helpful 8) One mum felt those who should have been supporting her believed she should have a termination! Can you imagine how awful it must be to feel like that? What do you think? I couldnt include every example and the above is the tip of the iceberg. I have experienced comments that have reduced me to tears. Im sure many comments are meant with the best of intentions, however some, as demonstrated above, are just cruel and heartless. I myself have questioned my choices and decisions based on a misinformed opinion. No question is too stupid to ask, Id rather someone asked something really basic and went away informed than made a comment that was both ignorant and hurtful. Also everyone has a right to an opinion, but be mindful your opinion is just that, its not a fact. How would you feel if any of the above was said to you or somebody you love? Thank you to all those who contributed and made this post possible. Get in touch: [email protected] Twitter: @fairyfaye1986
2 Comments
skye
14/1/2015 01:09:07 pm
I love your blog. I can't wait to see more updates about your journey and growing family.
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siobhan
15/1/2015 03:56:38 pm
Congratulations! I went through my pregnancy in denial. I had stopped my meds a couple of years before telling myself I didn't have epilepsy they were just funny feelings. But low and behold I had a full on seizure 5wks before due date which in turn brought on labour. My son was very unwell but not as a result of my epilepsy but today he's a very fit and healthy teenager. The neurologist I saw was then was incredibly unhelpful telling me I had to feed baby on floor whilst surrounded by cushions and made me feel very irresponsible for having a baby. I started on oxcarbazepine and continue to without problem. I received conflicting advice regarding meds in future pregnancy. That and the the views of others have had a big impact on my choice not to have another baby. To this day I regret this decision. I think under the right supervision pregnancy and epilepsy can be managed and I hope and pray you and baby are safe and well.
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AuthorMy names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy. Archives
December 2022
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