Accused of Faking it?
I don't know if it's just me, but more and more, I'm being accused of faking my condition or exaggerating my symptoms. I wouldn't wish what I go through on anyone, but to those who make such hurtful comments, sometimes I can't help but think, 'if only you knew, then you wouldn't be so quick to judge'!
I find that just because people don't understand or can't quite put my complete inability to do anything and the word 'migraine' together, that they then get annoyed. It's the impatience above all that I can't stand.
Following yet another stay in A+E, the nurses accused me of wasting their time, taking resources away from other patients and being inconsiderate of others. Well, I am sorry, but I didn't ask to waste 6 hours of my life in complete and utter pain in an A+E dept, when I have better things to do, not to mention that the choice to be there wasn't mine in the first place, but the paramedics'.
It's almost as though I am not in serious danger and so it doesn't matter; but, I am in danger in a way, if I am unable to get myself home safely or even walk in a straight line! I get that I might not be their most important case, but come'on!! A little respect please! It's even more infuriating when a young girl comes in who is absolutely paralytic from drinking alcohol - and whilst I don't wish her harm (admit it, we've all been there to some extent) - I have to wonder at why she gets a better standard of care and no impatience from the nurses when it is self-inflicted and I get treated worse than the dirt on their shoes!?
And to add insult to injury, the A+E dept that claimed I was faking in the first place, have now decided that I am no longer eligible to look after my son, that I am an unfit mother and that he is in harms way - let me add, that he isn't and if I ever thought that I couldn't watch my son, my husband would take charge - and so, they have or are getting social services involved!!
I came home from the A+E dept battling the beginning of the 'hangover' phase of the migraine, whilst also feeling absolutely completely worthless and with a view to thinking twice in the future about attending A+E. Not that it would ever be my first choice, if I know that I can make it home, but ANYTHING would be better than going through that again!!
And as an afterthought, considering the complete lack in my self-worth right now, I was thinking that if I ended up getting so upset and depressed and finding it hard to go on and did something about it and ended up in the same A+E dept, albeit with self-inflicted injuries, I would get better care!!
So, my question: anyone else experienced anything similar?
Hi Still-Smiling,
We are so sorry to hear about your story. You're not alone. Not many people understand what migraine sufferers go through.
Keep us posted.
Feel better,
Migraine Team
Hi there Still-Smiling,
Many of us have experienced the stigma that surrounds migraine and headache disorder in one form or another. Although we are making strides in migraine and headache disorder education, it really can't come fast enough.
It truly is devastating to hear that your child may be in harms way - according to people you've met once! I will keep my fingers crossed for you and your family.
It may be helpful to have your doctor fill out these ER forms (or A&E are you in Europe?) so the next time you have to go into there, they have your doctors orders to follow.
You are NOT alone in migraine disease that is for sure. However if you feel like you are so down you may harm yourself or others please contact someone who you can speak with. A trusted friend, pastor, or counselor.
Hang in there,
NancyHi Nancy and the Migraine Team,
Reading Kerri's blog did help; it's good to see that I wasn't the first and most likely won't be the last to be treated in such a degrading manner. At the very least, I have a new mantra: 'it's not about me', and I'll do my level best to remember that, the next time I'm faced with such ignorance.
Those forms look like they would be really useful and I have also taken the initiative and spoken with my neurologist's department to see if they can write an open letter to paramedics and A+E doctor's that explains my condition, how it presents and how to treat it (this was at the suggestion of a very nice paramedic a while back that I never got around to organising) - and it is such a good idea, especially when I'm in a state that is less than fully coherent.
I've also looked at getting an appointment with a migraine specialist to see if they can offer different advice to that of my neurologist.
Thank you for your concern and for your advice, I'm still hanging in there, still looking for hope and above all, still-smiling 😀
Hi still-smilling,
I'm so happy to hear the information was helpful! It really is important to know we are not alone in this disease.
I hope using the ER forms proves successful and takes so pressure off you. Great idea to speak with your treating doctors for an "intro" letter!!
Keep us posted on how you are doing,
Nancy
