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How to accept/handle people who don’t understand…and don’t care to

I am immensely lucky in that my friends and family are very patient and sympathetic when it comes to my migraine disease. They may not ever understand what it’s like to live life as a frequent migraine sufferer, but they do try to be as supportive as they can.

Surely there are some acquaintances of mine who don’t quite “buy” the seriousness of migraine or the immeasurably huge impact it has on my life, but I am fortunate enough to not have to hear their opinions.

Sadly, I am not in the majority here. Most migraineurs I talk with have at least one person–if not many, many more–in their lives who are what I think of as “migraine deniers.” People who cannot fathom what it’s like to endure migraine attacks and all their intricacies–or who don’t even take the time to try to understand. From an outsider’s perspective, it’s easy to give flippant advice: “Just ignore the nay-sayers!” or “Don’t let them get to you.” Ah, if only it were that easy.

More often than not, the migraine deniers out there get through to us because their comments are not only hurtful but persistent. I have gotten extremely fed up hearing readers’ stories about bosses, siblings, husbands, friends, and coworkers who roll their eyes when the subjet of migraine is brought up. As you probably know, I wish just one migraine on each of those eye-rollers. Apart from experiencing an attack themselves, it’s not likely that we will ever be able to get any genuine sympathy from them.

Here are a few things I try to keep in mind when I am faced with denial or misunderstanding of migraine:

  1. These people are in the privileged position of not having had to learn as much about migraine as I have. I cannot expect them to automatically understand where I am coming from.
  2. I can give people a chance to listen to me, and I can offer a calm introduction to migraine disease either through quiet conversation or through a handy letter like the one Migraine.com contributor Teri Robert has shared in the past.
  3. It is likely that these people have personal or medical issues I myself would have trouble identifying with, even if they don’t share those things with me.
  4. Getting worked up over their ignorance or lack of care does absolutely nothing positive for my mental or physical well-being.

Remembering these things, particularly #4. allows me to take a deep breath and realize what interactions are worth investing in and which are not. I do always want to let people know I am happy to share my migraine story and some medical information about the disease, but I don’t push it on them. I do try to give them a chance to listen, and if they don’t, it’s not something worth investing time in at that point. photo: self-portrait with a migraine, 2012, feeling awful and looking not like myself.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Nancy Harris Bonk moderator
    7 years ago

    Thanks Vicki –

    You make some great points. Motivating the masses seems to get harder and harder to do but we keep trying!

  • Vicki
    7 years ago

    Ellen and Julie: PERSISTENCE!! Though I’m sitting here now with a migraine, I’m replying because I feel the importance of this also. All these years of unpredictable, intermittent pain has held me back from my true potential of myself, personally and professionally. (I wonder what if….)

    People, in these times, have gotten very LAZY. Even too lazy to think. I work in the armpit of the public and I can attest to this. People don’t want to take even the slightest responsibilities like saying “Thank you”, “Excuse me”. Integrity and dignity have gone out the window. Sad. I had to sound judgemental, but 6,000 out of 14,000 sounds like a fair ratio.

    I say keep pushing along. Keep telling migraineurs that they CAN make a difference! Drill it into their heads! The numbers in the survey are real and they are important!

    Kudos to all you activists, and THANK YOU!!

    Vicki Thompson

  • Julie
    7 years ago

    Vicki and Ellen.
    Oh NO, I do NOT want to give up. I want to rattle some people and get them motivated and make them realize that they have to get off their rumps and make a difference in not only their lives but in the lives of others and stop being so selfish!! EVERYONE CAN AND WILL MAKE A DIFFERENCE IF THEY PUT THEIR MINDS TO IT NO MATTER HOW HARD OR HOW PAINFUL THEIR HEAD HURTS, OR THEIR BODY! Lets get MOTIVATED!!!!!!!!!!!!

  • Ellen Schnakenberg
    7 years ago

    Vicki – I agree on your summation. Persistence is so hard when we keep trying and trying and trying. But what else do we do? Give up? Naaaahhh. Not this advocate! It’s nearly time again for Headache on the Hill, and I’m ready to do it again.

    The only thing I know for sure, is that if we don’t try, we won’t make a difference.

  • Julie
    7 years ago

    Wow Ellen, we didn’t get enough people for Congress to do anything for Migraine. For that I am ashamed of my fellow migraine sufferers that sat on their rumps and did nothing! All they had to do was fill out the form that was sent out to everyone and it was even clearly posted on the site-how much more simplier could it get than that! So we had a chance and it was blown by 6,000 people who did nothing-not one thing! That blows my mind. And it will probably be those 6,000 that will cry the loudest for more medicine or medical help or that they are not being treated fairly, etc.

    That is sad when people like you and other advocates on this site bust your butts to help us out and give us your expert advice and people like Teri who go to Congress and speak on our behalf and patients cannot even be proactive enough to do their part! I really have no ideas at this time. You can do petitions but if people don’t respond like the last one that seems fruitless and pointless. Some people are too lazy to help themselves let alone to help others because they are not proactive enough in their own health care to be concerned about it nor to be concerned about others. There are several on this site that are concerned and respond to help others and be supportive, but there are a lot of people out there that keep to themselves and just want things handed to them w/o working for it and want to stay out of others lives. How do you shake them up to make them care? I guess for some people you can’t make them care-they are too self centered. But I think for the most part people that visit this site do care. Until you get more followers that become more proactive and spread the word I’m not sure what can be done. That is just a shame there were not enough numbers to make a difference. Now it will take longer and several more years before there may be a chance again with congress. Or there may not be another chance. This could have been a one time shot. Who knows.

    I feel deflated and discouraged which is probably a bad response in this news but I sure thought more people would have responded as this would have meant more migraine medication research and recognition for the disease. Now we’re just shoved back to the back of the line again and back to where we were. What a shame. And to think what 6,000 could have meant-what difference it could have brought to the research of migraine disease and medication research. And to doctor education, that right there is a major issue we face as patients-to have better trained doctors in the field of migraine disease. But to have this in the forefront as a LEGITIMATE disease was goal #1 with the recent petition to Congress. I don’t know what can be done now Ellen. Clearly there are people that are not willing to put in the effort so I don’t know how to work around that.

  • Nancy Harris Bonk moderator
    7 years ago

    Thanks for sharing with us Steve. I too am disabled due to chronic daily head and neck pain. My life changed dramatically after an accident, not from a MVA but a fall 16 years ago.

    It is difficult losing friends due to migraine and chronic illness. Would it be possible to see your friend alone once in a while, have lunch in a quite restaurant, without the wife? Then you could enjoy each others company and not worry about attitudes from other people.

  • Julie
    7 years ago

    I am one of those unfortunate few who have had to deal with extended family and those close to me for the past 30 years who chose “not to get it” about migraines. Especially when they became more severe in 2010. They got to the point where I was told point blank “tired of hearing about it” and “when will you ever get better you only get worse” and “you should just stop taking all those meds they just make you worse not better”. The side line MD’s without the license to practice medicine. Then the other few that say “oh, but you don’t look sick” or “if I were you I’d go to Mayo they’d (quote) cure you”. Of course when I won my disability hearing last April 2012 I saw it as validation I was too sick to work but I heard the rumblings that it was just “luck”. I tried for years to think positive and be positive and pray and meditate and try to educate. But you can’t educate the uneducateable ignorant few. And the ones that like to rate you based on your outward appearance take the cake. Still for years I try to brush it off until it gets mean spirited. That is crossing the line. I can only ignore so much for so long. To be in intense physical pain is one thing and I’ve come to the point I can endure a lot of physical pain. I’m not happy about it but accept it as a fact of my life. But emotional pain is another thing. That is hard to deal with, especially when you are weak from the trauma of all that goes with the migraine pain. It is beyond depressing. YOu get therapy that tries to help you but when your signifigant other doesn’t acknowledge thier part in it all it’s almost pointless, but alas I continue to try to work on myself. It’s a slipperly sloap where you sometimes feel like your sliding more than climbing. I wonder how many more are in the same boat?

  • Julie
    7 years ago

    Steven, oh yes you have hit the nail on the head in so many ways. I know how you feel and have been there too many times to count. I have lost friends too but have come to realize that if they were truly friends they would have stuck by me. But then again they cannot comprehend this “invisible” illness and the constant torment and pain along with the depression and isolation it brings. The many times we have to cancel because we are far too ill to participate due to the illness from not only the pain but to the vomiting, the disabling sensativity to light, sound and smell let alone how we react to the stimuli to sudden movement. How I’d love to go to the movie’s but the loud noise and action on the screen are such triggers, plus the noise from the audience-I cannot tolerate it. Plus too the fact there is just way too much stigma surrounding migraine! The silly commercials about popping an excedrin and you’ll be fine. well that’s all fine and dandy if your not s severely handicapped incapacited disabled migraine sufferer that Advil, Excederin, or Aspirin cannot touch and that alone leads to way too much discrimination to serious migraine sufferers to people like us who have a really hard time trying to function with day to day debilitating pain! You get to the point, trying not to be vindictive, that you’d like to wish a severe 2-3 day disabling migraine on some of this people just to give them a small dose of what we constantly go through to see if just maybe, in some small way, that they may come to understand. But that might be asking for a miracle because back in the day when Jesus was walking amongst his own people some saw and still did not believe, so if some tormentors or skeptics of migraines got a bad one they would probably still be skeptics. So it’s a double edged sword. I think sometimes in the back of my head, when it gives me a break from pain that is, we were given this disease to teach others something or to be an example. But right now I feel I’m failing on some level because right now I myself I am not getting it as to why I have this and what level to take it to. I thought I knew a while back but I guess it’s the weariness of dealing with it right now. I’m physically and emotionally exhausted with fighting the negativity surrounding me and fighting the migraine monster itself. I need to find a way out from under it all and not get beaten up. Like you said, the stress from the disease alone is enough to deal with. Dont need anymore added to it. I wish you well in your path Steve. YOU have indeed suffered too long and have lost too much as well. More than I have and enough is enough. There needs to be more education to the public on public TV about this disease and these commercials for excederin downplaying has to be stopped or put on TV more serious commercials and shed some light here. Chatting online is one thing but primetime TV is a whole new arena and to get this out in the open is what we need for validation and getting it out of the closet so to speak and removing the stigma and the shame that appears to come from family and friends because of the depression we have that comes along with dealing with this disease because we are islolated and abandoned because, again, of the stigma surrounding this disease. I say we need a platform and we need the media to get it out there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Am I right or am I just blaring and blasting empty words that no one will agree with? With that final thought I think I will go rest my weary head. Good luck to you Steve. YOu hang in there.

  • Ellen Schnakenberg
    7 years ago

    Julie – I think you know you’re preaching to the choir here, but yes, I definitely agree with you. The problem is that the stigma and stereotypes keep this from being made as big a public issue publicly as it is privately. As an advocate I am out there doing everything in my power, but it will take a million Migraineurs finally being fed up with the status quo before anyone with any kind of power to make a difference, stand up and, well… make a difference. The last petition to Congress didn’t even net enough people to trigger an automatic response from them. We had approximately 14,000 and we needed at least (I believe) 20,000. That’s not enough to make them pay attention to us, but just enough to make them notice we exist. So, I think there are many problems that need to be dealt with, but I’m with you and willing to do whatever we have to make it happen! Have you got any good ideas to bounce around?

  • Mert
    7 years ago

    I’m one of the easiest, laid back, non- confrontational, male I know and most of my friends would agree. After my MVA (motor vehicle accident) of August ’98, my life changed drastically. I had a migraine for 3 1/2yrs, everyday, average 7 and a daily background headache, of a 4. Now, the migraines are down to 3-6/wk, that put me in bed all that time or to the ER 1-2x/ 2 mths. I’ve now been Fed. Disabled for 11yrs. (HINT TO ALL; a lawyer may cost you, but it costs even more and a lot longer, not having one! To get you Fed. Disabled, get help!) Unfortunately, most of my friends just stopped calling, in all aspects of the word. They couldn’t handle my canceling at the last minute and so often. Thought I was boring and no fun, because I wouldn’t go to movies or bars with them. Even though, they were the same friends that helped carry me out of a movie theater, while vomiting. Learned that night, I couldn’t handle big screens and the sound. I don’t drink for obvious reasons. But, as it turns out, they just didn’t want to understand, easier to just leave. In fact, I’ve just lost a 18yr old friend/brother, before the holidays. Mostly, because of his “wife”, we’ve never gotten along. But, she never knew me before all of this. But, to them, I have nothing new to say, don’t understand why I’m so depressed…….yada yada yada. I try hard not to push my illness on others and have learn to respond honestly, buy quickly, when asked ” how do you feel?” And will teach, if someone wants. But, she always wants to push it further, until it gets to a point that she starts downgrading me. I miss my buddy dearly! He is like a brother to me. But, he puts up no defense for me , or even tries to stop the conversation. So, I end up leaving mad as hell! I do understand that he has decided to make a life with this lady and seems happy when I see them together. I don’t want my friend to lose, what he has built with her! So, if I need to back off and make it longer between visits or back off, to where we only see each other when she’s not around. I hate to lose him for good. Though, I think she’s wearing on his mind. Some comments that come out of him, is not the brother I know! Anyway, yes, my chronic migraine and chronic spine pain has cost me a lot. And the emotional pain, does not need to be added with the physical! I do at least have my family. Some of them can kind-of understand, with their 2-3/ yr migraines. But, not how violent mine are or the vomiting. But, they do try and that’s all that matters!! But, after awhile, even though it seems harder and harder to get up, with each episode, that put me down for days. Something will grab me inside and tell me to, “straight up”! But, it does get harder and harder. How about you? Plus, I’ve learned, there’s ENOUGH STRESS in my life with this. I don’t need the drama from someone that should, but has no clue and is hurtful (she gets 1-2 every 1-2 mths. ” not nearly as bad as yours, though.”) If someone never really has been injured, where they were out of the game of life for at least 9 mths. . They really have no clue. At least that’s what I find. But I’m not out much at all. I’m lucky if I get 111 days out of bed, each year. So, yes!! The pit has VERY slippery walls. Sometime it’s just hard to get the energy to try. Be proud of each step you make, trying to climb out! Don’t beat yourself up, if you fall, it’s just part of it. And as a wise doctor told me once, when I was commenting about being tired of watching the light go out at the end of the tunnel, disappear. He just looked at me and said, “so, don’t light it, until we get you closer! Why waste the energy, with all the stress that it puts on you!” So yes, I can’t speak for everyone. But there a days, harder then other ones. Days you’ll just want to stay in bed, with your head covered. Days you’ll want to scream at the 1st person you see and don’t know why. Days you’ll cry, wondering if you can continue. Days you just want to quit. There all normal feelings, for people like us. But, you’ll also have some really good days, cherish them, but don’t over push! As far as your significant other, be honest, let them know how much it hurts you on top of what you already feel. You’re just asking for a little help and want their support. A REALLY GOOD BOOK for you and your significance other to read, is; ” The Migraine Brain”!! Can’t remember the authors name. Migraine specialist out of Boston. Very good book for patients and family/friends. But, you need to take care of yourself 1st!! Relationships are hard for people like us. I haven’t dated in yrs, because most women turn off, when I say I don’t work, on SSDB. But, I still have hope, there’s a lady out there that will love me, for me. Illness aside. As my Mom says, from the outside, looking in. It like I’m on the strangest roller coaster ride. But, I admire the attitude you are trying with your friends. DON’T GIVE UP!! That’s what skeptics want you to do. DON’T!!!! Keep up the good work and know you’re not alone, as you may feel. Good luck to you! Steven ;-{)>

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