Migraine stigma

I recently worked with the Migraine Association to get an article in the press for HM and we were rejected as and I quote 'not enough people have it!' Until the press start to understand and report better, I do not think we will ever crack the stigma. On a personal level its interesting to see the different reactions I get from when I say I have chronic migraine and I had a minor stroke - and if I am honest and could swop all the mingraines for another TIA - I would - at least, given time, you get your mind and life back.

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Nearly 30 million Americans suffer from migraines, a condition characterized by crushing pain, frequently on one side of the head, that is often coupled with nausea and vomiting, sensitivity to light and sound, and sometimes even visual disturbances (known as aura). A single attack can take anywhere from six to 48 hours to run its course. This very specific type of headache often runs in families and is typically brought on by a variety of “triggers,” which may include physical or emotional stress, changes in sleep patterns, certain odors and bright lights, among many others.

But for a neurological condition as common as migraines, many people still doubt that it's a real condition. One recent study found that people with chronic migraines report feeling more rejected and ridiculed by friends, employers and even family members than patients with other types of neurological troubles, such as stroke, Parkinson’s or Lou Gehrig’s disease. “The stigma can reach deep into migraineurs' personal lives,” reported "U.S. News & World Report" when the study first came out. “Many people with migraine experienced ‘separation, exclusion and rejection in their relationships with family and friends when their condition prevented them from fully engaging in family and social events,’ the study found.”

In fact, the stigma is so widespread that some medical experts weren’t even surprised by the study, which was the first to look at how people with migraines are perceived by others.

“It was so obvious to me that I didn’t make special note of the paper,” says Jason Rosenberg, M.D., assistant professor of neurology at John Hopkins Medicine and director of The Johns Hopkins Headache Center. “I see it from husbands and wives who roll their eyes at their spouse for saying they have headaches to employers not recognizing it as an illness.”


http://www.huffingtonpost.com/2011/05/16/migraine-stigma_n_862255.html

Sadly this is all too true.

People look at me and they can clearly see I am terribly ill but then find it almost impossible to accept that it is caused by 'a migraine?'..and say 'but surely there must be something that can be done?'

I am sure they either think..she must have a brian tumour and their missing it or I am on the booze. Mind you we are not alone..when I had pancreatitis everyone just assumed I was an alcoholic and it was self inflicted. I don't even drink (for obvious reasons) but the stigma followed me even onto one ward where a nurse hissed in my ear..'big drinker are you?' as she administered my morphine.

I got my own back by vomiting on her quite spectacularly....then pointed out she might benefit from reading a patients notes next time.

Even if you move through neurology itself there is a stigma towards mig sufferers as opposed to people with MS or stroke victims..if you speak to students in training they always quote they want to work with these sufferers rather than becoming a headache specialist..we are the cinderella of neurology.

I am still fighting for recognition for incapacity and insurance purposes..sigh..we'll get there.

Sites like this help because I now am beginning to see there are more of us out there than I first thought..if we all pull together it will raise awareness.

Keep fighting on

JAne
x

..although my partner is called Brian..I don't think they named a tumour after him just yet..it was meant to say 'brain' obviously..LMAO

I totally agree. I think as well as people not taking it seriously, there is the issue that people think I just don't trot along to my doctor enough, and that if I did he'd just give me a pill to make it all go away.

Also, I find people relate to migraine through either their own experiences or other people they know. I can't tell you how angry I become when people imply that perhaps I'm not really that bad after all as I don't spend my entire life laying in the dark. We'd all be able to shut the world out for a day if we only got a migraine once in a while. Life has to go on somehow!!

Dont you find you also get it from "Normal" migraine sufferers as well, when I was knocked off my feet with this and they thought is was a cyst some of my friends and family were so supportive and helpfull but when they found out it was "Just a Migraine" that some of them suffer from, they looked on me with a different light, and actually said "you cant have a migraine for 18mths".......Oh yes you can.
One day I will open my eyes in the morning and there will be no pain that will be the day I dont have one, then I will be happy! I hope we all do x x
They are both in the brain and not visible but I had a scan that showed the cyst!!! We cant have a scan that shows the Migraine!!

Sheena x x

whitzendJane wrote:
I got my own back by vomiting on her quite spectacularly....then pointed out she might benefit from reading a patients notes next time

That's what they call Karma! LOL


But you are all quite right, most people do not have an idea about chronic migraine, and even those who have the 'standard 4/72 hr once a month' migraine, have no idea, because the media do not report them and doctors do not tell you it can go chronic. People just do not know this exists - To be honest until I had been gone chronic I had never heard of a migraine lasting so long, I knew they could be massive ones and take a few weeks to clear up - BUT YEARS! If I had been told I was at risk of going chronic, I may have changed my plans and although I love my twins to pieces, would I have gone for another baby after already having the 2 , would i have taken that more stressful job, would I have moved house so much -???

Anyway, I plan to write a piece during migraine week this September to cover this point and will issue a press release for us all to send to our local press - I will cover national press, but the more coverage we get the better. In the mean time, please do write to your MP and get them to sign the Early Day Motion - 1802 GP training in migraine and headache conditions

http://www.parliament.uk/

I have been seen out recently walking with a crutch as my leg gets so weak over distances I just cant do it. People asked me what id done and i just said it was nerve problems. I couldnt face the blank stares and 'knowing' looks if i said it was a migraine. How can a migraine stop you walking?? Same way a migraine can make you dribble, hear voice, become paranoid and delusional, and all the other horrific things it causes. But tell people you've got sciatica or MS its a different story. When my GP first suggested MS everyone was so supportive, my mortgage would have been paid by insurance, i had offers of help from everywhere. Then I come back with a diagnosis of HM and all of a sudden no one is that bothered. The symptoms although sometimes completely debilitating and severe enough to threaten job loss or loss of driving licence arent consistent enough to get any benefits or help, Insurance don't recognise it as a critical illness. It a dreadful thing to think but sometimes i wash they would change their minds and give me a diagnosis that people recognise.
Right thats today's feeling sorry for myself over. Im very proud that it is 7.30 pm and i am not in bed. Does anyone else get seriously tired?? like ridiculously tired??
xx

Oh we all get sooo tired... well I do anyway Sit me down and im off.....not so bad as I was but flonarazine is hitting me hard at mo!
I would sleep till 12 if I was not woken up and be in bed by 8 every night. I am making an effort at the mo to get up at 7.30 am and its lasted 3 days but slept for an hour each afternoon.
I have been shouted at that I look like Stevie Wonder when I wear my dark glasses in the winter! so what! I drag my leg and people stare at me! I DONT CARE! I have MIGRAINE.
Dont worry about them girl. when people ask whats up with me now I say my big toe hurts!!! they just stare at me and I smirk
Cause thats just me x

lol, brillaint x thank you cheered me right up! x

BIG HUGS hun - sounds like you need one today - but you are quite right - people just do not understand.

As for the tiredness - A BIG YES - I get so tired I have to have naps - I either get the kids off to school and go back to bed for a few hours or if I push it and stay up in the morning, by 4pm I need to lay down. I used to fight it and just got worse - now i give in and sleep.

LOL The Steve Wonder reference made me smile. I was called a Pre- Madonna once because I wore my dark glasses onto a building site one winter. A few months later the guy came and said sorry, after my husband had explained how I suffer

aww, thanks ladies that makes me feel better. I feel so guilty and useless for being tired. It puts more pressure on my husband as I don't get all my jobs done. I cant wait until my work hours reduce in a couple of weeks, its a real struggle at the moment to keep going.
I wore my sun glasses in the cinema the other day! We must have looked a right site, theres my son with his fingers in his ears for the noise and me with the dark glasses on! lol
xx

Thanks ladies hearing you all vent has really helped me today...It's not just me feeling frustrated with the inequality.

I am really sorry we all have to go through this BS every day but it is a huge relief to feel less alone with it.

Thank you
xxx

Big group hug!!

Yeah!!!!!!!

It's definitely a relief to not feel so alone. Honestly, it if wasn't for the internet I'd feel like an absolute freak of nature!