Monday, June 11, 2012

Migraine Awareness Month #11: "Say What?"

Today's prompt is:
Migraine Awareness Month Blogging Challenge #11: "Say What?"  What's the most ridiculous thing said to you about Migraines?  Who said it and under what circumstances?
"Well, at least it's not cancer."  "Well, at least you won't die from it."

I'm not going to name the people who have said this to me, but I know right now there are Migraineurs (especially chronics) who are reading this and shaking their heads in knowing disbelief.  What I write after this will be an eye-opener to almost everyone however...

In 2011 I participated in Headache On The Hill (HOH) with a breast cancer survivor.  While she was not an advocate herself and was not super active online, she did have something very important to tell those legislators we spoke to that day.

"Cancer was a breeze compared to living with Migraine."  

Here's what her explanation was...

Everybody understands cancer.  There are tests for it.  You can see it on an x-ray.  Diagnosis is fairly straightforward as is its treatment.  There are commercials for it, free testing for it, and support groups for it.

Because everyone talks about cancer, everyone understands what your body goes through during cancer treatment.  They support you.  They rally around you.  They bring you casseroles to eat for dinner, clean your house, run errands for you, drive you to church and doctor appointments.  They help you fight.

When you have cancer, everyone rallies around your family.  They are supportive asking what they can do to help, and offering shoulders of understanding for tears when they are overflowing.

Medications are constantly being sought for cancer.  Research is ongoing and enthusiastically paid for by the public and by society.

Once you say the words "I have cancer" nobody doubts you or your experience.  The only stigma re: cancer is when patients don't appreciate the pity party others often want to throw them.

Cancer has an end.  When this cancer patient went through treatment, she knew about how long it was going to take.  She had a light at the end of the tunnel and something to look forward to and strive for.

There was an end.  There are *cures*.

Migraine is not like that.  

Nobody really understands the how, what or why of Migraine.  Diagnosis is one of exclusion - there are no tests FOR Migraine because so far we don't understand the how, what or why and there are precious few public funds going to learn these things.  Pharma doesn't look at the how, what or why of a disease - that isn't their expertise.  That is left to researchers who are publicly funded.  If they can't get the funding to learn more, there will not be any new treatments coming our way.

Unless you suffer Migraine, you cannot understand the experience of an attack, nor living for days, weeks, months or years without respite from the pain, nausea and other debilitating symptoms.  If you are chronic, reality is that it can mean there is no end.  It goes on, and on, and on, and on, and on, and on... without end.

Migraine is an invisible disease which comes complete with its own long set-in-stone stigmas that date back centuries.

We are seen as drug seekers who are weak in constitution and willpower.  We are stressed out people that just haven't learned how to relax. We are complainers who can't take a little pain.  We are lazy and just want to get out of school, work and other activities.  We are fakers, or we have psychologic or psychiatric problems and just won't listen.  We are just a little depressed and need to cheer up.  The list goes on ad infinitum.      

When you are a Migraineur, especially if you are chronic, there are rarely people who are busy calling you because they want to help.  There are no casseroles, no trips to the doctor or church, no clean house.  There is no team rallying around you cheering you on as you fight your battles.  No hugs or letters of encouragement. 

There is no Relay for Migraine.  There are no 10K runs.  No bake sales.  No products with purple ribbons on them being sold at Wal-Mart.

What we do have is people who come out of the woodwork suggesting this or that treatment they read about or heard about somewhere that might have worked for someone they knew.  People who give us books on reducing stress, or doctors or yoga instructors telling us that if we would pinch our toes or just relax and meditate, all our health problems would go away.  We have teachers or bosses who chastise us for missing school or work, and co-workers who cause problems for us by turning the heat up too high, or wearing perfume or telling us to toughen up and pull our weight.  We have a government that, in the interest of being green takes away the only safe lighting for us, essentially mandating harmful fluorescent lighting giving us little choice but to suffer in silence wherever we go, including our own homes.

When a patient admits they have Migraine, there is sometimes a reply of "I'm sorry", but unless the party speaking has heard of a miracle cure they want to volunteer, it usually ends there.  The conversation changes, or simply stops.

When our family needs to talk out their frustrations, they are met with little to no support.  No understanding.  No help.  They are expected to *manage* their family and their situation in a way that makes it easy for everyone else to tolerate them. 

Migraine can in fact kill you.  Patients can suffer Migrainous stroke - it is rare, but I've spoken to many who have suffered this fate and been lucky enough to survive.  Plenty of others have not been that lucky. Being a Migraineur also significantly raises the chances of cardiovascular disease, and yes, death. 

Chronic Migraine patients too often find themselves desperate for relief.  They may become so desperate that they find they can no longer live in such pain and disability and instead choose to find their own way out.  It isn't that these patients want to die, it is a fact that they simply can't live with the pain any longer and see no other option.  The risk for unemployment rises, and with that, homelessness and depression.  Suicide risk is significantly increased in patients and yet this is rarely recognized.

Migraineur Marie Little - wife of comedian Rich Little, tragically committed suicide

Those taking multiple medicines for their Migraines are at increased risk for adverse events and medical mistakes.

Migraine does in fact take the lives of patients too often.  Rarely will a death certificate read "Migraine".  Instead, it may read: Accidental Overdose.  Medication Reaction.  Organ Failure. Heart Attack. Etc.

So my question is, what do you say to people who have unhelpful things to tell you about your Migraine disease?

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