Migraines, Support, and Unnecessary Rudeness

MimeQuestioningOne of the most essential aspects of living with Migraine disease is having a good support system. This is true at any age, but may be even more important for children, teens, and young adults.

The Internet provides us with more opportunities to give and receive support than ever before, which can significantly improve our health and our quality of life.

There are, however, unique problems with online communication and groups formed for support. There are two that tend to raise their ugly heads with increasing frequency:

  1. Written communication online lacks hearing a person's tone of voice and seeing their facial expressions. This can lead to people misunderstanding what they're saying and how they're saying it.
  2. This is truly sad, but too many people will say rude, obnoxious, hurtful things to people online that they wouldn't dare say to their faces. They forget that the people they're talking to are real people, not just Internet entities.

Let me give you an example...

Because of the work I do, people tend to add me to Facebook groups without asking or telling me. I've been getting notifications of posts to one such group for some time now. Yesterday, I went to the group to see what it was and why I'd been added. I clicked on the link to see the list of members and find the group administrator. She wasn't one of my Facebook "friends," but I clicked to go to her Facebook page anyway. She has her privacy settings set so that you can't see what's on her page unless you're FB friend, so I couldn't tell anything about who she is or why she might have added me to the group.

So, I went back to the group and posted, "Why was I added to this group. People shouldn't be added without being asked." Well! That started a firestorm. People thought I was being "snarky," even though I was just asking a simple question, and they quickly posted some incredibly nasty comments to me.

It turned out that the group was an online support group set up to help a young woman who's having severe problems with Migraines. The members who posted so nastily saw their comments as "having her back," and herein lies an enormous problem.

Having someone's back doesn't have to be done by being unnecessarily rude and nasty toward other people. Nor is having someone's back an excuse for such behavior. In fact, it makes the whole group, including the young Migraineur, look really bad. People with Migraine and other headache disorders need to stick together, not tear into each other.

I implore everyone to think twice before saying something rude and obnoxious and consider...

  • Are you sure you understand what the other person was saying and how they meant it?
  • What would be accomplished by responding meanly and rudely?
  • Even if the other person was rude, do you want to be that kind of person?
  • Wouldn't it be more productive to be kind and polite and try to turn the other person around?

The bottom line is that living with Migraines and headaches is difficult enough. None of us needs extra stress from misinterpreting what other people say or being the target of nastiness and rudeness. So, let's just not do it.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2013
Last updated May 7, 2013.


Migraines and Our Migratude - Let's Explore!

ExploringMigratude166Hello and Happy New Year to all of my extended Migraine and headache family!

Some people have asked me about my resolutions for the new year. I'm taking a different approach this year, and I'm not making any resolutions. Although resolutions are great for many, people, I've found that they can make me feel like I've failed when health issues prevent achieving them.

So, instead of making resolutions and asking you to share yours, I've decides to introduce a new concept and an initiative to go with it - one that we can utilize all year, every year, to help us improve our health and our quality of life.

In developing this concept, I wanted a new word that would truly reflect what I was trying to say. So, using the process of word devivation, here's our new word...

I combined our aptitude for learning
about and coping with Migraines

 with

our attitude toward Migraine management
and living with Migraines

to get the word

Migratude.

Aptitude:

The knowledge we acquire about Migraine disease and our treatments is one of the most valuable tools we'll ever have. With that knowledge, we can:

  • be more effective working as treatment partners with our health care team;
  • make any treatment decisions that we need to make when we get a Migraine;
  • teach family, friends, coworkers, and others about Migraines;
  • and much more.

We also need to have or develop good coping strategies for living with Migraine. Some of us can do that with the suport of fellow Migraineurs, friends, and family. Others may find that it helps to work with a psychologist or psychiatrist for assistance. Either way, our attitude toward coping with Migraines is critical too. 

Attitude:

Our attitude is sometimes overlooked, never addressed at all, and that's a huge mistake. Have you ever taken a psychology class? If so, you may remember the priciple of self-fulfilling prophecy. I am most certainly NOT saying Migraines are "all in our heads." What I AM saying is that our attitude is a big part of the equation for good Migraine management. For example: If we start a medication with the attitude that it's going to be a failed attempt or that we'll have side effects, that's most likely exactly what will happen because our minds are so powerful. SO, let's use that power in positive ways.

The attitude we develop toward Migraine management and living with this disease has a very strong impact on many things, including:

  • how successful we are in working as treatment partners with our doctors and other members of our health care teams,
  • the success of our treatment plan,
  • how we interact with our support system,
  • our quality of life, and
  • much more.

Along with the coining of the term Migratude, I'm starting an ongoing Migratude initiative to look at what impacts our Migratude, how we can develop and refine it, and how we can support our fellow Migraineurs who need help improving and sustainging their Migratude.

The goal of the Migratude initiative is better health and a better quality of life for all of us.

So, what do you think? I hope you'll join me in this initiative and develop your Migratude with me.

TERI-Migratude-300

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2013
Last updated January 7, 2013.

 


Migraine Awareness Month 26: "From The Outside Looking In"

AwarenessMonth2012BC2Good morning, and welcome to day 26 of National Migraine Awareness Month!

Today's prompt for the Awareness Month blog challenge is:

Migraine Awareness Month #26: "From The Outside Looking In."
Write about what you think your family, friends and others think a day in life, a day with Migraine disease is like.

From the outside looking in...

Most of my family and friends are only vaguely aware of my job as a patient educator and advocate.  It might surprise you to know that the majority of them don’t even know where I work other than ‘online’. 

I have never asked them what they think my days are like, but they occasionally give me a little insight with the things they say.

Sadly, some of my friends think that I spend all day long visiting Dr Google, obsessing over my health conditions.  In reality this couldn’t be further from the truth.  Most of my time is spent either writing, or helping other patients online.  Most of these people think that spending time online must make me feel worse, when in reality the opposite is true.  Helping others gives me purpose and keeps me concentrating on everything but my pain, so I can often be found even working while in bed in the dark, iPad on my lap.  I stop for the day only when a Migraine is completely out of control. 

A few relatives think I waste my time each day in front of a television eating bonbons.  I wouldn’t know a bonbon if it stood up and introduced itself to me.  Although a radio or the television is often on for background noise to drown out my tinnitus (ringing ears) I rarely watch TV unless I happen to be passing through the room at an especially interesting time.  I average approximately 12 hrs a day working as an educator/advocate.  It’s true that part of this time is my job.  However, the vast majority of it is volunteer.  Patients are my priority.  Even with those numbers, I still feel that I let some patients down because there just aren’t enough hours in the day.  I do my best and hope they see that.

A few friends and relatives think I waste my time on useless or frivolous sights such as Facebook and they see no purpose in it.  The reality is that I visit many online social media platforms, participating in too many of them to really count.  Sometimes I ask questions myself because I am always learning, but usually my time is spent helping others who are asking questions or looking for support.  I also keep in touch with other patients through these social media platforms, and we are often found sharing prayer requests and comfort for each other.  Hardly a waste of time in my book. 

I take my meds when I’m supposed to.  I distract myself from my pain every day.  I take out a little time each day to concentrate on things that cause me to pause with wonder and smile.  I enjoy the time I spend with my dogs and cat, and although my heart aches for the interaction, I enjoy watching the daily activities of the horses that surround my home.  I plan to go somewhere at least once a week because this makes me feel like my life is a little more regular.  I struggle to be as normal as I possibly can, with a very *not normal* situation. 

It’s my fault that my family and friends aren’t more aware of how I spend my days as a Migraineur because I could just talk about what I do and how I spend my time, but nobody is asking questions and I don’t feel the need to sit them down and bore them with the details.  I think they don’t ask questions because the reality is that they don’t want to know the answers.  They know I live in pain and that makes them feel uncomfortable.  They don’t know how to talk to me anymore.  Mostly, they are uninterested and busy with their own lives.  That happens with all of us from time to time.

My hubs and kids know how I spend my time because they live (or used to) with me each day.  My kids are Migraineurs too, so they understand from that perspective.  My world became very small when I got sick and that’s okay.  It’s okay that they are the only ones who “get me”  because they are the ones who matter most.  And the most important part of this equation is I am blessed that they DO understand and know me, and I am not alone.

 

~Ellen


Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."

AwarenessMonth2012BC2

Today's prompt is:

Migraine Awareness Month Blogging Challenge #16: "Lead, follow, or get out of the way."  Which role fits you and why?

Although I would prefer that none of these three categories exist and we all work equally within a community, I have found that in practice, it rarely works this way.  Those who know me often hear me say “The cream eventually rises to the top.”  Given enough time, every community member finds the spot he/she is most comfortable. 

 As a result, two of these categories fit me I’m afraid – Lead, and Follow.  Although I’m not much of a get out of the way anymore, I do like to be an Indian when I can, so from that perspective I even fit *get out of the way*.

As a kid, I was the painfully shy, quiet one that didn’t want to stick out.  I loved being a get out of the way'er because there was less stress and it was easier to blend in that role.  When in grade school, I began doing art work that was getting noticed.  It was hard to stay in that get out of the way role after that, no matter how hard I tried.

By the time I was giving riding lessons and training horses, I had left the get out of the way role behind.  Get out of the way's don’t make good teachers, and they make lousy animal trainers.  Although that was where I was most comfortable, it wasn’t really where I belonged anymore.  It took a long time to come to terms with that and learn how to be comfortable as a leader.

When I first began helping other patients, I wanted to be a get out of the way'er.  I wanted to blend in and I stayed anonymous for a very long time trying to do that.  However, because I had so many personal experiences to share, I ended up often finding myself in leadership roles in my online communities, despite my best efforts.  I just couldn’t stand by watching people suffer when I had some of the answers to their questions and problems, and those skills to be a leader. 

Despite the fact that every one of these roles is vitally important to a community, it’s hard being in leadership roles! 

In the animal kingdom, most groups function on a hierarchal principle.  Typically there are alphas (leaders) and the leader’s best friends or number two’s (followers).  Then there is everyone else (get out of the way'ers).  Among the *everyone else* group there will be constant jockeying for higher positions and better status, because in the animal kingdom, this means a better chance at survival. 

Every once in a while, someone wants the leadership position and starts a fight to get it.  This is understandable in animal societies, but I like to think that in human society, with our ability to communicate verbally and work together with purpose and forethought, this jockeying for position should be unnecessary.

I have never felt that, in an ideal world, online communities should be run this way – we are all patients and all have similar experiences to share.  We gain or lose as a group depending on whether our groups are successful in what they are trying to accomplish.  The bottom line is, we are all valuable, and every time someone leaves a community, we are all the poorer for it.  There are all times when we should be leaders, followers, and times when we need to be getting out of the way so we can get things done. 

Have you stepped up into a leadership role within the Migraine community?  Do you consider yourself someone who is more comfortable following, or do you participate actively and the *get out of my way* position fits you best?  How do you think you would feel if you were thrust into another position?  Why?  We hope you'll let us know in your comments below...

~Ellen

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

 


Children... Adults... Migraine... So Many Thoughts!

On this Monday morning, as I start the new week thinking about all the people I know who are starting the week with a Migraine, I'm also starting it with today's  - to write an ekphrasis post. Ekphrasis is writing about an other art form, and this challenge is to choose an image that inspires us positively or negatively and free write about it. The challenge is also to give ourselves exactly 15 minutes to write without stopping or editing.

So, be warned. I'm going to insert the image, then write and post, without editing...

ChildBandagedBear400
Migraine is a vicious, insidious, pernicious, hateful, insidious, malevolent disease. About the only good thing that can be said about it is that it isn't sexist or racist... it doesn't discriminate against the young or the old. It will brutalize anyone.

Migraine first struck our granddaughter Alex when she was just 2-1/2, still a baby... too young to tell us what was wrong, but not too young to suffer. She hid her face against Becky (her mother) to avoid light. She cringed at every sound. And she held her tiny head and cried in pain.

When it comes to not caring about the burden of a disease when allocating research funding, the NIH doesn't discriminate either. There's no correlation between disease burden and research funding, and FDA officials I've had contact with don't discriminate based on age, gender, or race any more than Migraine does. The funding seems to go to the squeakiest wheel, regardless of whose needs get ignored.

The stigma associated with Migraine acts the same way. Stigma doesn't give a damn about age, gender, or race. It smacks everyone and anyone down. What's truly upsetting about stigma is that it's PEOPLE who create and perpetuate stigma. It's PEOPLE who make other people feel like crap about themselves just because they have Migraine, a genetic neurological disease. PEOPLE who do this to strangers, family, friends, life partners, children, anyone - without discrimination. PEOPLE acting out of ignorance, being judgemental, being "doody-heads," as our grandson Johnny would say.

You! Yes, you! Do you, even without realizing it, add to the stigma and misery associated with Migraine in how you react to people with Migraines? Do you tell them, "It's just a headache. Take some Tylenol?" Do you criticize your coworker who missed work because of Migraine? Do you continue to wear perfume or fragranced lotions to work even though a coworker has Migraines that are triggered by fragrance? Do you get angry if your friend has to cancel out on going somewhere with you because he or she has a Migraine? Have you quit calling a friend because they're so often unable to do things with you because of their Migraines?

Oh, yeah. Migraine will strike anyone. It doesn't discriminate. What's even more disturbing is that many people are the same way in the way they treat people with Migraine, and that perpetuates the myths and misconceptions AND the stigma associated with Migraine.

Stop and think about it. Do YOU feed into the myths, misconceptions, and stigma? If you have Migraines, you may be unwittingly feeding into it. When someone makes a comment or otherwise demonstrates that they haven't a clue when it comes to Migraine, how do you react? Those of us living with Migraine owe it to ourselves and other Migraineurs not to just "let it go." We need to be educating other people when we encounter these problems. It's old and cliché, but it's true. If we're not part of the solution, we're part of the problem. If you don't have Migraines, you're bound to know someone who does. There are more than 37 million of us in the US. How do you respond to the people you know who have Migraines? Do you respond with understanding, riducule, or indifference?

WAKE UP, PEOPLE! This disease is difficult enough to live with without us making it worse for people. Learn, share, educate, help dispel the myths and bust the stigma. Look at the photo above that I've been sitting here looking at. What if she were YOUR child?

Whew! I didn't really mean to go off on a rant or step up on my soap box, but it happened. I hope you'll think about what's I've said.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

Puz-only-btn


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© Teri Robert, 2011
Last updated November 21, 2011


Chronic Migraine - Rewrite Your Day Update

RewriteYourDayButtonA few weeks ago, I told you about the Rewrite Your Day Chronic Migraine awareness campaign in my post Chronic Migraine Awareness and an Opportunity to Relive a Lost Day.

The Rewrite Your Day campaign is dedicated to raising awareness about Chronic Migraine and bringing attention to its heavy burden and potentially devastating impact on an unprecedented scale. People living with Chronic Migraine have a diagnosis of migraine and experience headaches on 15 or more days per month with headache lasting four hours a day or longer.1,2,3 People with Chronic Migraine are invited to the Rewrite Your Day website to share their stories about important days and events that this devastating disease has caused them to miss. To that end, celebrity event planner Mindy Weiss and a panel of five advocates (including me!) are selecting 15 eligible people who shared their stories to re-create that special moment or day in their lives.

Serving on the judging panel:

I’m truly honored to have been asked to serve on the judging panel. My experience so far as a judging panel member is… well, it’s difficult to put into words because of all the emotions that it’s churned up. It’s touching, heart-breaking, excruciating, and extremely challenging. It’s also humbling, inspiring, electrifying, and exhilarating.

The entries evoke disquieting memories:

It’s going to be difficult to select “winners,” but the first round of winners are to be announced soon, so the selections have to be made. As I read them, the impact of the entries is staggering. They evoke disquieting memories of my own experience with Chronic Migraine and times when those nearly daily Migraines were like thieves stealing my life away from me. To say that what people have written is touching would be an understatement of the highest magnitude.

Imagine…

  • … missing your six-year-old daughter’s school play and her missing it as well because she was so disappointed.
  • … planning to renew your marriage vows with a special ceremony on your 10th anniversary, followed by a celebration with your family and friends, only to have to cancel it because of Chronic Migraine. Then imagine planning it again for your 15th, 20th, and 25th anniversaries and having to cancel all of those plans too.
  • … being a father of two young daughters and traveling six hours each way one weekend a month to see them, only to have yet another Migraine and not be able to do things with them.
  • … living the difficult life of an Army wife and caring for your children and family matters on your own while your husband is deployed, then being unable to participate in a special family trip when he arrives home from deployment.
  • … missing your daughter’s wedding, best friend’s wedding, your own wedding!

If you have Chronic Migraine, you don’t have to try very hard to imagine those scenarios. You may have lived some of them yourself. If you don’t have Chronic Migraine, consider the examples above to be mini peeks into the lives of those who do.

You can still enter:

If you have Chronic Migraine, it’s not too late to enter the Rewrite Your Day contest. Entries will be accepted through December 30, 2011. Sharing your story not only enters you in the contest, it adds to the collection of real experiences shared by real people that will be available for the public to read. This will help other Migraineurs know they’re not alone and it will give the general public a look into the lives of people with Chronic Migraine to build awareness and reduce the stigma associated with Migraine and Chronic Migraine. If you suspect you have Chronic Migraine, please visit RewriteYourDay.com to find a doctor who specializes in the diagnosis and management of the condition.

Some Migraineurs have told me they’re hesitant to enter the contest because they’re concerned that their Migraines and/or headaches are so frequent that they’d be unable to participate if they were to win the contest. We fully understand concerns about Chronic Migraine keeping people from being able to relive moments or events. Here’s what we suggest –

Please go ahead and share your story about an important event or day that Chronic Migraine caused you to miss. Or, alternatively, share your story about something Chronic Migraine prevents you from doing. It could be cleaning your house and washing the windows, preparing a nice family holiday dinner, painting your bedroom and installing darkening shades and draperies, or any number of things. It could even extend to sharing how Chronic Migraine caused you to lose a job.

If you choose the alternative I’ve described, after you share your story, write that you’re concerned about your Chronic Migraine preventing your reliving a moment or event. Then tell us something we could arrange that you could handle. Examples: hiring a cleaning service to clean your house, hiring a chef to prepare that holiday dinner, bringing in someone to redo your bedroom for you.

The goal of asking people with Chronic Migraine to share these experiences is to demonstrate how debilitating the disease can be and how much Chronic Migraine can take from people. We’re convinced that reading about real experiences of real people can go a long way in raising awareness of Chronic Migraine, help the public understand it better, and help reduce the stigma of Chronic Migraine and the burden that accompanies it.

Visit the Rewrite Your Day website at www.RewriteYourDay.com for:

  • the contest information and entry form,
  • information about Chronic Migraine,
  • finding a specialist who can diagnose and manage Chronic Migraine,
  • and more.

Disclaimer: I am under contract to Allergan, Inc., for the Rewrite Your Day campaign as a consultant and one of the panel of advocates selecting the winners, but it should be noted that I am receiving no financial compensation for my participation.

____________
Resources:

1 Headache Classification Subcommittee of the International Headache Society. The International Classification of Headache Disorders: 2nd edition. Cephalalgia. 2004;24(suppl 1):9-160.

2 Olesen J, Bousser M-G, Diener H-C, et al; Headache Classification Committee. New appendix criteria open for a broader concept of chronic migraine. Cephalalgia. 2006;26(6):742-746.

3 Manack A, Turkel C, Silberstein S. The evolution of chronic migraine: classification and nomenclature. Headache. 2009;49(8):1206-1213.

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated November 17, 2011


Support for Migraine - Who's Responsible for the Disparity?

Mime-sad150 Earlier this week, a new entry was posted on the blog of the Alliance for Headache Disorders Advocacay, Why the Disparity in Attention and Support for Migraine and Headache Disorders? Written by Bray Patrick-Lake, an AHDA board member and President and CEO of the PFO Research Foundation, this blog entry echoed some of what I've frequently thought.

Bray said, "As patients, we have not done a good job of imploring those around us to take up our cause, nor have we effectively taken up our own cause." Sadly, she's right. Bray and I are both Migraineurs ourselves. We've both had times in our lives when it was all we could do to get out of our beds because of frequent and severe Migraines. So, we fully understand that there are many Migraineurs who are physically unable to do many of the things she and are are now able to do to advocate for our cause.

I don't want to put words into Bray's mouth, but let me explain a bit why I get so frustrated with some of my fellow Migraineurs. The AHDA has been working hard for about five years now toward increased research funding and more awareness of Migraine as a disease and headache disorders in general. There are other organizations wroking on awareness issues too. There are times when the AHDA issues action alerts. An action alert is basically a call to action, times when we need people to write to their Senators and members of the House, asking them to support requests that AHDA advocates have made of them in person or other issues that have come up. We work hard to make it quick and easy for people to respond to these alerts. In 10 minutes or less, literally, you can follow the link we provide to send an email to your members of Congress. Parts of the email are prewritten so you don't have to worry about missing the vital information that needs to be sent, and there's a section where you can enter your own personal emssage as well. You don't need to know who represents you in the Senate or House or their email addresses. Wehn you enter your name and address on the form with the email message, the automated system finds the correct people and their email addresses for you.

When there's an action alert from the AHDA, between my personal address book and the email newsletters I send, I personally send links for the alert to more than 25,000 people. Would you care to guess what percentage of that 25,000 people take action, follow the link, and send an email? On a good day, it's three percent! I know who takes action because I get a copy of every email that's sent.

I wish I knew why people don't respond and take the 10 minutes to participate and advocate for themselves and others whose lives are so severely impacted by Migraine and other headache disorders. Do they think that one email won't make a difference? Do they think that there will be plenty of email sent without their participation? This is something I just don't understand. I have to admit that when I've sent an action alert and someone who didn't take action then emails me or posts to my forum asking for help, part of me wants to say, "But you need to help yourself too." The frustrated part of me SO wants to say that, but I can't. I can't do that to someone who needs help.

I think I can speak for Bray in this - We both hope that our speaking so honestly about this will make people think. We both hope that the next time people see opportunities to do something to make things better, they'll be proactive. Whether it's responding to an action alert or taking a couple of minutes to educate someone who thinks that a Migraine is "just a headache," we can all play a role. In fact, if support is going to increase... if the stigma is going to decrease... if our lives are going to get significatnly better, it's going to take all of us participating and advocating for ourselves and others.

Live well,


 

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© Teri Robert, 2011
Last updated June 17, 2011


Western N.Y. Migraine Support Group: Join Us Tuesday

My friend and colleague Nancy Harris Bonk has started a Migraine and headache disorder support group for western New York. Their second meeting is scheduled for this coming Tuesday, May 17, at 7 p.m. I'm pleased to be joining them by telephone to discuss improving patient / doctor communication.

If you live in the area, please consider joining us!

For more information, please visit the Western New York Migraine and Headache Disorder Support Group site.

Live well,


 

Puz-only-btn


Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated May 15, 2011