You just don’t understand…

Most of the Migraineurs I talk to deal with the same problem. It’s not the physical pain that our attacks cause, although that can be so bad it disables us.

No, the pain that often causes the most damage is when a loved one doesn’t understand what we’re going through.

I think most people are surprised to learn what an impact they have on the Migraineur (that’s us) that loves them. While their world remains the same, our world shrinks and shrinks. Bits of our lives disappear as the monster gets stronger. We treasure every last tiny tidbit of the lives and people that we had before the Migraine Beast. It can get so bad that we hang on with all our might to people who are no longer good for us.

There are two types of people who don’t understand us… those who want to, and those who don’t.

Those who want to understand us need to be educated. This sounds easy, but the reality is quite different. One reason is because most people already have a preconceived notion of what they think Migraine is. This is where the two groups split. Those who listen and ask questions are those who want to learn. Those who find an excuse to end the conversation are not interested in what you have to say.

There are many different ways to handle someone we want to educate. We can:

  • Sit them down and start a conversation — I suggest doing this when you’re not Migraining and when and where everyone feels at ease.
  • Ask someone else to sit them down and start a conversation — I think someone close to you is great, but it should probably be on the other person’s turf so they will feel they can engage and ask questions and not feel threatened.
  • Wait for them to ask a question — This is the patient person’s approach as most people don’t know what they don’t know.
  • Educate them by osmosis — piece by piece allowing them to see our experience first-hand through time and telling a little as we go. This is the gentlest means.
  • Send them to a website or hand them written literature — If you don’t sit there and watch them read it, they may come away just as confused as they started. If you do, you’ll likely seem pushy.
  • Wait for them to look it up themselves — this rarely happens without prompting.
  • Ask them to come to the doctor with us — This allows them to ask questions of the doctor, thereby eliminating all chance we could be *elaborating* on the severity of the disease.
  • Ask them to come and care for us when we are Migraining — This can be helpful or make things worse if the person thinks it is a mental or emotional issue.

To begin, I usually ask the person, “Would you like me to explain Migraine disease to you?” You can also tell them, “You are such an important person in my life, I really would like to explain what is going on with me. Do you have the time?” This is often just after I’ve said some *amazing* factoid like — “There are 37 Million Migraineurs in the US and not even 400 Headache specialists to treat us” that has gotten their attention.

What works for one person will epic-fail with another.

The most important thing to do is get the conversation going. Once it starts, it usually gets easier and easier. I’ve started the conversation by handing over a list of potential trigger foods before a family dinner. That piece of paper is a great ice breaker.

Some people will need us to go very slowly. Some literally need a picture drawn to understand. Some want to push us faster because they already “know this part.” Then there is the *storyteller*. You know — the one that has a story for each and everything you have to say. That’s okay. They’re engaged and likely learning even if they are taking you along for the ride.

Through the years I’ve noticed that engaging and educating people about Migraine is a lot like being a missionary. The more you force the issue, the less likely they will be to hear your message. The most successful are those that show love and compassion and fortitude. Those who force feed their message end up ignored or chastised.

So, how did you educate your family and friends about Migraine Disease? Share your stories here so we can all learn how you approached the situation.

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

View Comments (36)
  • Sharon Alexander
    7 years ago

    Hi Ellen! One way I have found success is through my support group (St. Louis Migraine Support Network). We welcome and embrace our support partners as members. They come to meetings and connect with other people who live with migraine sufferers. They listen to us and come away with a better understanding of our challenges. (Sometimes what we say to our partners sink in better when they come from other people’s lips.) Our meetings are often a casual conversation over coffee as opposed to textbook teaching with medical jargon. Often the people who had to be dragged to their first meeting are the ones who want to come back. Once we have their attention, they are much easier to educate. It works!

  • Sharon Alexander
    7 years ago

    Yes, Ellen! There’s a list on the NHF website:

    http://www.headaches.org/NHF_Programs/Support_Groups

    Also, you can go to Meetup.com in their city and search the words HEADACHE and MIGRAINE to see if there are any groups near you.

  • Ellen Schnakenberg
    7 years ago

    Sharon, I absolutely think this can be another terrific method of getting the right information “out there”. I wish there were more support groups available for patients. Do you know where we might be abLe to find a list of support groups near patients?

  • Milka Johanna Roman Vargas
    7 years ago

    IM SO TIRED A DEPRESSED ABOUT MY MIGRAINES SOMETIMES I JUST WANT TO DIEI GET SO SO SICK.

  • Milka Johanna Roman Vargas
    7 years ago

    i dont know

  • Teri Robert
    7 years ago

    Milka,
    It’s possible that you’re also experiencing major depressive disorder (clinical depression), and some treatment for that could help. Migraine and depression are often comorbid, which means that we can have both at the same time, neither disease causes the other. If you’ve never mentioned how you feel to your doctor, you should so you can get treatment if it would help,

    If you’re not making progress with your Migraines with your current doctor, maybe it’s time to change doctors. Take a look at Is It Time for a New Doctor at http://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/

    One thing you can count on is that people here understand. When you feel this way, you can talk with us.
    Teri

  • Anne Lown
    7 years ago

    I am sick nearly all the time and suffer from terrible fatigue. It just floors me when someone comes out with ‘But you’re on medication!’ because they can not understand that the medication does not cure my illness, it just helps me to function rather than be confined to my bed. Just because their headache goes when they take a tablet they think mine should too. If only!

  • Ellen Schnakenberg
    7 years ago

    Anne, it is so terribly unfortunate that society tosses about the term “cure” so much without actually understanding it’s meaning. There is no cure for our Migraines, but there are treatments. Finding the right one often takes a very long time however, and realistically those treatments do help us, but they cannot “cure” us or take away our attacks. This disease is with us for life. We have to learn to deal with that, and they do too. It is very hard when we realize the implications of that, and just as hard – or even harder – for those around us to understand it because they are not living in our shoes.

  • Jenn R
    7 years ago

    I sometimes feel as frustrated as everyone else with chronic migraines I’m sure…

  • Maureen Baxter Douglas
    7 years ago

    It is funny that I just had a big argument with my husband about this yesterday. He sometimes likens this to a cold. Tells me I am sick all the time. My ability to think is damaged with them but I seem to be able to do muddle through other things like cleaning and such.

  • Linda Barham Nabors
    7 years ago

    Thanks Aimee, for reminding me to count my blessings. I am so blessed to have my family.

  • Kayla Voss
    7 years ago

    I agree that not having the understanding and support of those around you because they don’t understand how disabling having chronic migraine and daily headaches can be because you don’t “look sick” and trying to explain it is difficult. Only those who suffer with this disease understand how life changing it is. Not only do you have to deal with the daily pain but also depression from the loss of how life once was and the struggle of trying to go through life carrying a headache with you everywhere you go, it changes who you are……..

  • Wendy Rincon
    7 years ago

    This is an awesome article..I think I’ll print it and bring it to my doctor :). Thank you for writing it so well!

  • Aimee King
    7 years ago

    I think the hardest part of migraines for me is when loved ones think they get it, but then still continue to treat me like I can still do everything everyone else can, just because I can when I don’t have one (which is almost never). I want badly to live a normal life again, and it’s hard enough to deal with my own expectations, let alone other peoples’. One day at a time! I have faith that I will find the answer some day.

  • Aimee King
    7 years ago

    Yes Linda. I wish people could just be more understanding of others in general. You just can’t know what someone feels like till you’ve been in their shoes. So many health problems, mental health problems, even just emotional situations are hard for someone on the outside to begin to understand. Best thing anyone on the outside can do is just be supportive, and I’m lucky that I do have some great friends and family that are great about that. I guess I shouldn’t be so impatient about the others who aren’t and count my blessing, huh?

  • Rosa Faria
    7 years ago

    *huggly huggles*

  • Lynda Mary Farrell
    7 years ago

    Hugs to you Aimee. It’s maybe kind of like having rheumatoid arthritis, crohn’s disease, sjorgens syndrome, spondylitis and glaucoma. None of them show that they are hurting you so bad you want to scream…and people think you are just fine when you almost want to die.

  • Janene Zielinski
    7 years ago

    I haven’t thought about it much before, but my “circle of friends” has gotten much smaller – I suppose mainly because I don’t have enough “migraine free” time to spread around. I’d never realized that was probably the main reason until I read your article. Prioritizing my time means getting my work done so I stay employed, spending time with my husband and family and also having some “me” time. I have had people ask me why I spend so much time alone – they are thinking I’m a bit anti-social. When I have a migraine I like to be alone (unless my husband is tending to me). But then I also want a bit of “me-time” that doesn’t include migraine. So, I suppose I could seem selfish with my time to someone who doesn’t understand. In a way I suppose, migraines have made me a bit selfish with my energy. I have to spend it so very carefully. Sorry to ramble. Hope that makes sense.

  • Ellen Schnakenberg
    7 years ago

    Jenn R I think you are on to something there. This is one reason why I think the best headache specialists are those that suffer themselves.

  • Jenn R
    7 years ago

    Makes perfect sense to me to! People who don’t understand it sometimes I think just are not able to comprehend it because it’s never really something they’ve experienced themselves

  • Maureen Baxter Douglas
    7 years ago

    It makes perfect sense

  • Dollie Goode Lee
    7 years ago

    I have suffered from migraines since I was about 15 years old they got worst last year fiannlly I had a good dr that would listen to me about them an she sugested a cat scan , well they found out that I had a brain tumor.sent me to a nerologist he said it was there an it was 5 cm long a big one so they did surgery I spent a month in the hospital, had to go through 2 surgerys because I had a leak in the back of my head , so they put in a mesh plug after they tryed 2 different lumbar drains witch I had to lay flat on my back for 2 weeks then the first one got infected so they removed it an put anothr one in , it didn’t work either so there came the other surgey.then I spent 2 months learning how to rewalk.the pain didn’t leave I still have the migraines they only got worse.know they think I need a nerve blokage in my head to stop them.my family an friends acted like I was just acting like I had all this pain an I feel that no one belived me.all the drs before always acted like I just wonted meds , which they never gave me.i think that drs need to pay attention to us people when it comes to migraines things could be more serious than they think. I had god on my side r I wonted have made it these far , i have tryed living in darkness , soaking my head in warm water in the tub in the dark , no sound going on sometimes it helped a little but not much.i was going through 100 tylenol a week.i have gone through all of this an still haveing really bad migraines.what do I do next? I don’t wont a nother surgery I just wont the pain to stop! just fell so hopeless.

  • Ellen Schnakenberg
    7 years ago

    Dollie, are you seeing a headache specialist? To find out if your doctor is a headache specialist that has passed the exam you can see this link: http://bit.ly/q9tToV Just because they are specialists doesn’t necessarily make them good doctors, but it is a start. There are likely many different things that have not yet been tried on you that might be helpful. Hang in there…

  • Niji Butterfly
    7 years ago

    This is essential reading for anyone who shares life with a migraineur! As mom to a son with hemiplegic migraines, he and I have gone through so much of this with family and friends. Some really do want to help and learn, some are really stubborn. It has been especially hard dealing with those who were sure that he was faking it or told him to tough it out because “it’s only a headache”. Honestly, I was surprised that there is so much misunderstanding regarding children and migraines, even from doctors. If I could say anything good has come from this it’s been that Son has learned from an early age to self-advocate and learn everything about his condition for his own health.
    Thanks, Ellen for such a great primer!

  • Carolyn Cappitelli
    7 years ago

    I have lost family and friends because of my migraines and have been labeled as unreliable since I cannot make plans for future events. After needing to cancel appointments and social commitments many times because of a migraine, people got tired of hearing the “excuses” and just stopped calling. Several doctors have even threatened to dismiss me as a patient because of too many cancellations….one was a Neurologist who was treating me for my Migraines! Some people will never get it because they don’t want to.

  • Milka Johanna Roman Vargas
    7 years ago

    Cappitelli I FEEL FOR U I DON EVEN HAVE MEDICAL INSURANCE

  • Carolyn Cappitelli
    7 years ago

    Aimee, I am disabled and only recieve SSI. They cut back so much that the doctors won’t accept it anymore and the meds are harder to get because they don’t come in generic form so I know what you mean. I’m so frustrated!!

  • Aimee King
    7 years ago

    Oh, and what I try to do, it doesn’t always work, but I try to schedule appointments at a time my husband or other family member can drive me to appointments so that in the event I have a migraine, I can toss on my dark sunglasses and a hat, and try to just suffer through going anyways. It’s miserable, but I try not to call out unless it’s the worst of worst migraines anymore since for me I have them more days than not and an appointment could get pushed out and out for months if I cancelled every time I had a migraine. Hoping that idea can help you maybe.

  • Aimee King
    7 years ago

    I struggle with this too. I had a great psychologist who seemed to be the only medical professional that “got it” and I had to switch insurances now and have to find all new dr.s now :S Hopefully both of us can find some good doctors that can actually understand our medical condition and help us.

  • Ellen Schnakenberg
    7 years ago

    Carolyn, and that is a topic that’s coming soon too!

  • Dawn Dawson Schell
    7 years ago

    People have gotten very frustrated with me in the past because of my dietary restrictions, and how I went about telling them. I used to say “I can’t have that.” One person rightly told me I needed to stop telling her what I couldn’t eat, and tell her what I could. I was flummoxed, because it hadn’t occurred to me to do this. I was also still in the midst of figuring out what all the triggers were. As to the migraines, and people understanding, I have mostly been lucky so far. Either people have had them themselves, or have been willing to listen. Combine with Fibromyalgia and hypothyroid though, and most people have no clue. I am my own best advocate, but it is very hard when the person has no concept.

  • Ellen Schnakenberg
    7 years ago

    You know, those who spout potential treatments to us, and “cures” and other ideas really are doing the only thing they know to do to help us. It’s easy for us to lose patience with them because we are living with this disease. Most of us have been to doctors for years – sometimes multiple doctors and specialists. Even here at Migraine.com we will often have other patients suggest treatments to us and different ideas that might sound preachy. I think nearly all of it comes from a place of caring. If they didn’t care, they wouldn’t bother. I’ve been helping people with their Migraine questions for years and have seen more doctors than I can count over my 30 yr history with Migraine, yet I still get well meaning people in my life trying to advise me what I should do next, or what book I should read etc. It used to bother me, but it doesn’t anymore, because it really does mean the world to me that they want me better and are trying their best. Who knows – maybe someday someone will tell me something new that I haven’t tried! Until then, I listen to them with an open mind and heart and thank them for their ideas and their caring. Then I often begin to educate them then and there about the realities of Migraine Disease. When I spout Migraine facts that mystify them or surprise them (which is surprisingly easy since most non-Migraineurs only “think” they know about our disease), they begin to get a feeling for the education I have about my Migraines and Migraine Disease as a whole. This often leads to questions and a meaningful conversation. I try to leave myself out of it until the end where I usually will give an anecdote of a situation I have been in sometime. I really don’t think these people in our lives don’t believe us… they just simply don’t understand. It’s our job to educate them. The fact is, if it doesn’t mean enough to us – the Migraineurs – to do it, why should we expect them to do it themselves?

  • Maureen Baxter Douglas
    7 years ago

    True….I just had a conversation where it was implied that maybe I did not know the difference between a migraine and a muscle tension headache so I was venting. I do believe most of it is out of caring . Most times I am fine with it and have learned new things,

  • Linda Barham Nabors
    7 years ago

    This is a huge issue for me. As I progress into Migraine and Fibromyalgia disease, I become less able to communicate through speech and in writing form. In the past I was a good writer and now I can’t find any words and I ramble and mix stuff in all the wrong order. (As you can see). Family really doesn’t want to hear it anymore, new acquaintances always have their 2 cents. Most of us have tried everything and people don’t really believe that I am trying to get better because I don’t ooh and awww about their advice. God bless those few who you know are trying to understand and if they don’t get it, they still believe you and are continually concerned for you.

  • Carolyn Cappitelli
    7 years ago

    Hang in there, Linda….we “get it” here and have each other :o)

  • Maureen Baxter Douglas
    7 years ago

    I try very hard. One thing I have found lately is that everyone wants to educate me about my disease. They tell me what my triggers are , what drug to try, this that. Maybe it isn’t a migraine, maybe maybe maybe. I try to smile and listen but to be honest I know they are being helpful but I am seeing a Dr. for it. I have tried so many things and I am willing to try things but no one understands that while we are in the middle of trying a treatment I can’t throw something else in there. I will never know what works and what doesn’t and with over half my days in pain I have to find something that works to stop them. I don’t know if I am rambling( I think I do that a lot lately ) but feel like most of the time people don’t hear me anyways.

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