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Living with Migraine

Accused of Faking it?

  • By Still Smiling

    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?

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  • By Nancy Harris Bonk Moderator

    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. Let me share the link with you; https://migraine.com/blog/emergency-migraine-treatment-forms/.

    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,
    Nancy

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  • By Still Smiling

    Hi 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 🙂

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  • By Nancy Harris Bonk Moderator

    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

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  • By Ellen Schnakenberg

    Still-Smiling,

    We have several additional links that may also be helpful for you if you ever find yourself needing to go into the emergency department again…

    Why does the Emergency Department treat me like a drug seeker? https://migraine.com/blog/why-does-the-emergency-department-treat-me-like-a-drug-seeker/

    Tips and tricks for a successful Emergency Department visit https://migraine.com/blog/tips-and-tricks-for-a-successful-emergency-department-visit/

    Migraines From an ER Doctor’s Perspective https://migraine.com/blog/migraines-from-an-er-doctor-perspective/

    An ER Doctor’s Perspective: Strategies for Migraine Relief https://migraine.com/blog/an-er-doctor-perspective-strategies-for-migraine-relief/

    Migraine & The ER — A Follow-Up Interview https://migraine.com/blog/migraine-the-er-a-follow-up-interview/

    I’m so very sorry you had to experience this. Next time you may want to consider bringing someone else with you. When you have an advocate to help you, you are much less likely to be mistreated. Also, bringing a recording device with you is also helpful. It won’t stop staff from thinking nasty thoughts, but it will at least help to keep them from verbalizing them or mistreating you. If you need an excuse for the recording device, often stating it is there so you remember everything properly is enough to put staff at ease. This makes it much easier if you find the need to report unruly staff to hospital management, which unfortunately is not a rare occurrence I’m afraid.

    You are not alone. Hang in there, and look at this as an opportunity to educate staff so that other patients won’t receive the same abuse you endured.

    ~Ellen

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  • By ithurts99

    this isn’t exactly a reply but I rarely comment and didn’t know where to go with this. After reading the 2012 Migraine Study I noticed what I would call a huge disconnect between pain levels as reported in that study and the pain levels reported on this website’s “Migraine Meter” . I was wondering if other people have noticed this as well since my migraines recently went from manageable-ish to so bad its scary.

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  • By Ellen Schnakenberg

    ithurts99 – That’s a really good point. Online surveys are not always very representative of the community as a whole. The meter tells you what those that chose to click it are feeling. Since it is an easy click, many more will click that than answer questions usually. In the past, only about 2% of people going to a site will interact. Ideally the results would be the same, but not necessarily.

    -Ellen

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