Skip to Accessibility Tools Skip to Content Skip to Footer
The ONE symptom we all have in common

The ONE symptom we all have in common

Despite the wide variation of symptoms, there is one universal symptom I think we all experience. This symptom cannot be found in the ICHD-3, nor is it likely that your doctor will ever ask about it. That doesn’t mean it isn’t real. I believe that every single one of us is either suffering from or recovering from INVALIDATION. There is no diagnostic test for it and no medicine will cure it. Most of us don’t even know we have it.

Invalidation occurs when our experiences are questioned, minimized, ignored, or otherwise deemed to be anything other than what we actually experience. The more frequently and earlier in life that it occurs, the more damage it does. Almost anyone can invalidate our experiences – family, friends, teachers, co-workers, doctors, and even other migraineurs. Sometimes people are guilty of invalidating our experiences without even realizing it.

What are the symptoms?

Chronic feelings of worthlessness, feeling misunderstood, thinking we don’t have the right to our own feelings, questioning our perception of reality, and feeling defensive are just some of the symptoms. Like victims of abuse, people subjected to invalidation are at increased risk of doing the same to others. Not being able to trust your own perceptions can leave you feeling insecure. You begin to question everything. If you can’t trust your own perceptions, how can you trust others?

Are there treatments?

The one sure-fire way to fight the effects of invalidation is to receive loads of validation. Hearing the words, “I believe you,” is healing. When someone takes a genuine interest in learning about your life, it begins to heal old scars left by those who questioned your experiences. That’s why support groups, both on and offline, are so important for people with stigmatized illnesses like migraine. When we find out that other people have the same experiences, it restores our faith in ourselves. So many times, our readers will respond to articles and each other’s posts by saying, “Me, too. I thought I was going crazy.” That’s validation.

Can it be prevented?

Sure. It’s not easy though. We can prevent migraine patient invalidation by educating people. When the truth about migraine is widely available to everyone, then we have a fighting chance. Slowly, in small pockets around the world, we are making progress. There is still a lot of work to be done, though. We can start by educating those closest to us and by practicing validation with each other. When our experiences differ from that of other migraineurs, we can open our hearts and minds to believe their truth without negating our own.

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

  • SPSwafford
    3 years ago

    Such a great article… I especially feel this insecurity right after a migraine. My emotions are off. It takes me a while to get back to myself, physically and emotionally, so I am either very short and hateful or insecure and teary. I really wonder why I have such severe post-tictal type behaviors.
    I really appreciate and recommend Migraine.com to my fellow sufferers. The continued support has helped me tremendously and the continual pop up on my inbox helps when my next migraine rolls around. Thank you!!!

  • dado
    3 years ago

    It is not so much invalidation for me as it is lack of knowledge by others. When I say “I have a migraine”, I don’t mean a headache. I mean my life is getting ready to cease to exist normally.

  • BrendaWW
    3 years ago

    Between lifelong severe asthma (I’m on 3 different inhalers a day when well & add prednisone & 2 nebulizer solutions when sick) & migraines for the last 27 years, it has not been easy. I have been accused of “faking it”, drug seeking & being a hypochondriac. My favorite meds for relief are not even narcotic. I don’t get high off asthma drugs or Imitrex. Last Summer I overheard my husband tell his sister that I was not really sick after struggling to breath & being on pred for almost 6 months. A few days later I was hospitalized with pneumonia. I was on high dose pred for 12 months. I have been well for the last 6 months & between pred withdrawal, weight gain & loss of stamina & muscle tone I am just now STARTING to feel like myself again. But truth is I cud get sick for months or years from just a cold. With migraines at least they seem to be able to confirm my pain from my “starry eyes” (looks like I’m drunk) that are one of my symptoms. It makes everything worse when your family does not believe & support you.

  • ReaderV
    3 years ago

    What a lighting Bolt! I never talk about these feelings. I have to feel fully confident in my knowlage and skills in order to do something I’ve never done before.

  • RainorShine
    3 years ago

    I try not to worry what other people think. Its really hard though when my husband will see me lying on the couch with two ice packs and say you want to go out and eat. We have been married 25 years and I am too sick to strangle him. LOL

  • Marysu
    3 years ago

    In 1992 I faced the suspension of my nursing license related to medications for migraine. I had to see the state psychiatrist who informed me he had never heard of anyone having headaches like mine. I wanted to scream!! In order to keep my license I had to declare myself an addict and give up the medications that were keeping me functional and not home in bed. After an unbelievable nightmare I finally said goodbye to nursing because I just could not do all that the Board was asking and adequately treat the near daily migraines I have lived with for almost 50 years. Invalidated? You bet! It still ticks me off!! At least now there are diagnoses for these migraines and I have the same doctor who treated me through the nightmare and never doubted my headaches because he sees dozens each week with chronic headaches! Migraine is a multifaceted disease, it is very real and the cost for me has been high, but I am thankful that better education of practitioners will continue to improve our experiences with our treatment plans. It can only get better!

  • BrendaWW
    3 years ago

    I’m so sorry you went through small of that.

  • ReaderV
    3 years ago

    Which state do you live in? Laws might explain why they could get away with mistreating you so unreasonably. That’s really sad.

  • Debora Stamper
    3 years ago

    It’s a fine line to walk- trying to explain the disease to people vs coming off as whining. Plus, people don’t remember what you tell them.

  • MTKM
    3 years ago

    Before I was diagnosed with migraines, I used to get a headache the first day of my period, every month. It didn’t go away with taking over the counter medication. I told my ob-gyn who told me that if I thought these were hormonal, I was mistaken. Needless to say I never went back to him. Unfortunately, the migraines did not stop when I went through menopause and I still have them 25 years later. I was finally diagnosed with migraines about 7 years after that incident but I have yet to find one doctor – even a neurologist who will sit down with me and let me tell him/her my experiences of migraines. So for the last 5 or 6 years, I refuse to even bring up the subject with a doctor. Just give me my prescription.

  • onehsancare
    3 years ago

    And I hate to seem to invalidate someone else’s experience, but when I can’t see straight or put three words together in a sentence, hearing, “Oh, I just take a Tylenol Migraine and my migraines go away” just pisses me off. Right. I should try that.

  • donnajeann
    3 years ago

    I also would say they are pretty lucky and for me I say they are as useful as handful of M&M’s

  • Tammy Rome author
    3 years ago

    It is hard to hear that. When someone says that to me, it feels very invalidating. Sure, some people are that lucky, but not most of us.

    My typical response is to say, “Wow. You are so lucky. For me, that would be about as useful as a fist full of Skittles. I have to take much stronger medicine and even then it doesn’t always work. I sure hope you never have attacks like mine.”

    That usually shuts them up. 😉

  • SharonChilson
    3 years ago

    What a poignant article. All my life I have struggled with no one understanding migraine, or even giving it credence. To this day, after 37 years of marriage, my husband still struggles trying to understand. Sometimes he still makes me feel like I should be apologizing. Sometimes it IS my fault; I had a glass of wine or two, I spent too much time in the garden weeding, I ate too much banana, which are all triggers for me. When I have no migraine symptoms, I am cheerful and happy, and talkative. I will be like that for up to 2 or 3 weeks sometimes, so he gets used to it. Then I will have migraines for 4-5 days straight, and that is when he starts trying to “fix” me. He knows it is a disease of the brain, but he just can’t quite come to grips with the fact that his wife has it. Forever. None of the doctors I have had over the years had/have migraine disease, so again, I am trying to explain something they can never imagine. I myself did not know what was wrong with me until I was in my early 20’s, and a coworker was talking about the symptoms she had, and a whole new world opened up to me. It had a name. Why is it so hard for people to get that we are not “faking” it? It has taken me many years to not be apologetic when I have a migraine attack, but in my mind I still feel like I need to. Thank you for writing this article. Just the fact that you wrote it gives me validation.

  • Tammy Rome author
    3 years ago

    You are most welcome. Thank you for sharing your thoughts, too! {{gentle hugs}}

  • peeperview
    3 years ago

    Thank you so much for writing this.

  • Debora Stamper
    3 years ago

    Yes, thank you for writing this. It validates our experiences.

  • Tammy Rome author
    3 years ago

    You’re welcome. Thank you for taking the time to read it! 🙂

  • cal2
    3 years ago

    I always come here and find something that I could have written and I’m so grateful. A few moments later I start sobbing because it hits so deeply and hurts so much. The longing I have for friends and family to try understanding overwhelms me. I’m only now confronting doctors and getting rid of those who lack respect and don’t listen. Thank you for writing and letting me know I’m not alone.

  • donnajeann
    3 years ago

    First time on this site and think it will be helpful for me because I get so depressed as it seems no one understands what I go thru. Plus getting upset when I have to cancel functions which makes me feel bad.

  • Joanna Bodner moderator
    3 years ago

    Hi donnajeann,
    We are SO happy that you found us!!! We are thrilled to have you part of our community! Please know that you are never alone here in the migraine.com community and we are always here to support you. Always feel free to reach out. It’s a wonderful place to connect with others who truly understand how you feel and what you are going through. Here is an article you might like to check out which provides you some additional tips on where to find support: https://migraine.com/blog/top-places-to-find-support/.

    Additionally, commitment, making plans and actually being able to honor & stick to those plans is rare when living with migraine. I thought you might find this article interesting: https://migraine.com/blog/i-cant-make-it-i-have-a-migraine/ and be sure to read the comments at the conclusion of the article as this will remind you that you are certainly not alone with this frustration.

    Again, please never hesitate to reach out!

    Warmly,
    Joanna (Migraine.com Team)

  • Tammy Rome author
    3 years ago

    Any time. {{gentle hugs}}

  • Karen
    3 years ago

    Oh my goodness, did this article hit home for me! I have suffered from Chronic Daily Migraine, Complicated Migraine, Chronic Daily Headache, and Hemiplegic Migraine for the last 18 years. My parents don’t believe me, my husband believes me, but makes me feel guilty when I am in pain (which is pretty much all the time) and I just left a doctor I had for 5 years, and when I looked in my records, HE didn’t believe me! I feel so… I don’t even have a word. Thank you for putting this into words. It means so much to know I’m not alone.

  • SharonChilson
    3 years ago

    Boy, Karen, you are writing my story. Because this is something in our brain, it is invisible to everyone. You are fighting the good fight, looking for a doctor that is understanding and compassionate, and the one thing you have to do is not feel guilty. For me, it is a daily struggle not to apologize for being in pain, and I spent way too many years feeling guilty. It is hard, but you will find a doctor that will try to help, and you will feel better just for that. Stray strong, and find something to smile about every day.

  • Tammy Rome author
    3 years ago

    We’re 38 million strong. You are NEVER alone. {{gentle hugs}}

  • Colorado4Now
    3 years ago

    I believe in us all, even when others do not!

  • maxgordon
    3 years ago

    I had a (former) friend–a psychiatrist no less!–who told me that my migraines were just my way of getting out of social obligations. Then one day we were having a great day, having lunch, when a migraine hit full force. I spent the night throwing up at her apartment. She never mentioned my headaches again.

  • Judy H
    3 years ago

    I recall a migraineur who claimed in a publication: When I go to the ER and they don’t believe me, I throw up on their shoes. YESS!!!

  • Tammy Rome author
    3 years ago

    Sometimes that’s all it takes — just one nasty, very public attack — to get the naysayers to shut up. 🙂

  • 207bawk
    3 years ago

    How dreadful for you. I have invalidation from all my family & friends.I don’t hear from anyone anymore really. i have yet to get across the unbearable pain brought on by migraine.

  • Karen
    3 years ago

    I’m sorry you are going through that. I know you don’t know me, but I believe you. Hang in there. You are NOT alone.

  • Mixi
    3 years ago

    Same here 🙁 THE only person who has always beleived me is my mother and I am so grateful ! Even my husband sometimes do wonder if I simulate a headache just to be able to go to bed or not to go somewhere he thinks I don’t want to go 🙁

  • Erin
    3 years ago

    I’m glad I read this feature. A few nights ago I was forced to go to the er. The migraine was so awful, I was contemplating how hard it would be to cut off my own head. I was hoping to get a Benadryl treatment. This treatment contains no narcotics of any type. The nurse practioner, or however you spell it, went out of her way to make sure I understood that she believes that I’m just a drug seeker. She called me a junkie to my face. And that I was only there to get high of pain killers, even though I expressly told her I didn’t want narcotics. She ignored this, and me to tell me I was a huge problem to my clinic and hospital. I live in a town of about 1000 people, so everybody knows everyone else’s business. My GP has never thought that I’m a lying junkie. She then ordered two tiny shots of Zofran, that should have been in one shot, she made sure that I got another injection to punish me. And two extra strength Tylenol for my over a hundred degree fever. I have rarely ever felt so incredibly embarrassed, and helpless. I practically had to restrain my sister. She was shaking with rage. This woman made very sure that she didn’t believe me, and in fact thought I was faking it for a high. It was so awful. I still don’t quite know how to feel or who I speak to at the hospital to explain what this,not even a real doctor, did to me, and how she made me and my sister feel. It was one of the worst experiences I’ve ever had. And considering I’ve had chronic daily migraines for 14yrs, that’s saying something. Sorry, I really needed to vent.

  • Karen
    3 years ago

    Never apologize for venting here! We are here for you! And you should write a letter to the head of the ER department, and copy it to the head of the hospital. Write what you wrote here, include the nurse’s name, and everything she said to you. She NEEDS to be called out for what she did, so she doesn’t do that to you again, or to anyone else. To say that you’re drug seeking when you SPECIFICALLY say you don’t want narcotics is abuse. Please report her. I’m glad your sister was with you.

  • Judy H
    3 years ago

    I absolutely understand your dilemma. I have made dozens of trips to the ER over the decades. I have never experienced the nastiness that you have. I typically wait until day 3 or 4 before I cave and go to the ER simply because I don’t want to get that kind of treatment.
    However, on one such visit, the ER doctor was horrible. He merely gave me a small dose of the typical migraine cocktail – toradol, etc. He checked back 30 minutes later, and I told him that the pain wasn’t gone yet. He snapped back “yeah, I know. I didn’t give you enough to make it go away. You need to go home now.”
    On another visit to a different ER (where I am typically treated with respect), I was ushered into a room, then the “primary care” nurse came in. I immediately asked if she was wearing perfume. She got really snotty with me and said “well if that’s a problem, you’ll have to go to another room because this is MY room!” I insisted on a different room – the staff complied.
    (I truly believe that healthcare workers should not wear perfume. It is not just migraine sufferers who are sensitive to perfume. I know of others who are allergic. Plus sooner or later everyone is going to end up in a doctor’s office or ER.
    Wake up administrators!!

  • Coley
    3 years ago

    Please complain to their administration and point out your history there. The administration of a hospital is supposed to deal with complaints of awful workers. I’m SO sorry you went through that. Thats so unacceptable! I hope you have better days to come. I don’t blame you for needing to vent.

  • Daniel Blessed ByGod
    3 years ago

    Vent….vent…What a terrible situation. Some people are totally ignorant of migraines.I would imagine that every chronic migraineur has had this issue with someone be it a M.D., N.P., friends or a co-worker. This link is a piece from one of the moderators. https://migraine.com/blog/how-to-accepthandle-people-who-dont-understand-and-dont-care-to/It. This may sound absurd at the moment but maybe when you have a good day you should gather as much migraine information as possible and pay a visit to this nurse practitioner and educate her. In the mean time Keep your head up and look forward to your next good day. I pray your GOOD days become longer and your bad days become shorter. Keep smiling.. 🙂

  • Luna
    3 years ago

    “and by practicing validation with each other. When our experiences differ from that of other migraineurs, we can open our hearts and minds to believe their truth without negating our own.” Well said.

  • Daniel Blessed ByGod
    3 years ago

    I too think your assumption is true. When you tell a co-worker that you suffer from chronic migraines the response is typically not one of sympathy or invalidation. I too believe it is from a lack of proper education. I believe most people learn about ailments in the same way that they do from other ailments that they do not experience themselves…through others who have. An example would be a heart attack. You may have never experienced one yourself but you know someone who has. You know first hand how it has effected their lives and probably yours also. I am now relying on others to help invalidate my own personal ailments. As of late I have been sharing my migraine education with anyone who will listen. Well if they make the mistake of asking ” how are your migraines ? or ” how was the treatment you received for migraines “? If we are ever going to get invalidation Ms. Tammy is absolutely 100% correct. We as a collective have to do our part in every way we can to help educate the public on migraines and the treatments of them. I personally believe the moderators and participants of this site have been a blessing to me. Please have a great day and remember there are actually people out there who literally do share your pain. 🙂

  • Kate
    3 years ago

    So true! I hate how much the word “migraine” is thrown around to just mean headache…its so much more. Also, many people have it more or less severe than others. Even when someone says they can relate to you, they may in fact be experiencing something quite different.

    I actually primarily deal with New Daily Persistent Headache (although I also get migraines), so another thing I’ve dealt with is questioning the actual diagnosis…a NDPH diagnosis doesn’t rule out something else actually being wrong, it only defines a set of symptoms & circumstances. I imagine down the road multiple conditions will be defined as subsets of NDPH. Until then, in the back of my mind, I question if there is a diagnosis that has been missed that may even be treatable (although I’ve done the best I can to rule out lots of stuff). Best wishes.

  • Teechur
    3 years ago

    I also have chronic daily headache but at this point it’s been almost 4.5 years. Mine started after a really rather small, subarachnoid hemorrhage in January 2012. I was told by my Neurosurgeon I would be fine within 4 weeks. Well…still waiting.

    Even while still in the Critical Care unit I had one nurse who somehow decided (which I was not aware was within their pervue) that I didn’t really need my pain medication. Well not only was I having horrible head pain, but I was also having myoclonus, which is twitching but mine was more like short-term Charlie horses in my abdomen. It was horrible. He said he felt like I was taking too much and he was going to spread them out and see how long I could go without. When my husband got there and found me in pain (I’m an ultra marathoner, I run long painful distances on purpose so it takes a LOT to make me cry) he about lost it. This is a man who is cool as a cucumber.

    I actually have lost/left friends who have invalidated my pain, and doctors as well. When one friend replied to a FB post, “Come on! It’s only a headache!!” I cut ties with her (we were real life friends). She knew what I’d been through and how hard I work to advocate for my own treatment both naturally and using science. (In other words I won’t take some quack pill without having science to back it up, nor will I ignore my doctor’s advice for some Snake Oil salesman

  • HeatherLJ
    3 years ago

    I too have been diagnosed with NDPH and chronic migraine. I have also had so many tests and tried so many meds. To no avail. I just got back from Mayo Clinic and in the end are just trying neurontin at a very high dose. If anything worked I would be grateful. But having no answers is awful. Mine started the day after I went into anaphylaxis from an allergy shot. Ever since Jan of last year I have had either the NDPH Or a migraine and usually both. The only conclusion was that the two epi shots they gave me scrambled my brains. I am doing my best to educate those without migraine and provide info for those that have from occasional to Chronic migraine as well.

  • Poll