Skip to Accessibility Tools Skip to Content Skip to Footer

Second-Guessing the Severity of Migraine

Easter. Yet another holiday I spent at home alone while my husband brunched with his dad and ate dinner with his mom. I nagged at myself most of the day, thinking, “This migraine isn’t so bad, why didn’t you go out?” When I finally stopped beating myself up, I acknowledged that
the migraine PAIN wasn’t too bad, but the rest of it rendered me in no shape to be social.

I was physically and mentally fatigued. Combining words into coherent sentences was beyond my ability. My body felt weighted down by sandbags so that just standing up was a monumental effort. When I tried to walk, I shuffled and weaved drunkenly. The nausea, which prevented me from eating, was no picnic either.

At a level 4, the pain wasn’t “too bad” considering the level 9 and 10 migraine attacks I’ve had. You know what I mean — the amount of pain migraineurs call “not too bad” is usually pain that most people would find quite distressing. For a reality check, I consulted the excellent
comparative pain scale created by the Health Organization for Pudenal Education, which describes level 4 pain as:

“Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.”

Migraine is so often thought of as a headache, yet I’m reminded on a regular basis of the many ways it which it isn’t. Not only is the pain not the same as that of a “bad headache” a non-migraineur experiences, but it is accompanied by many other symptoms that aren’t present with a typical headache. These symptoms, including nausea, vomiting, fatigue, weakness, and vertigo can be debilitating even when the migraineur experiences no head pain at all.

Perhaps because so few people — including doctors — understand the myriad debilitating symptoms of migraine, migraineurs seem to spend a lot of time second-guessing themselves, wondering if their illness is real. Even I wasn’t convinced that pain, mental and physical fatigue, and nausea meant I was too sick to join in Easter celebrations. Quite practically, it was the feeling of imminent collapse when I stood, which I knew would make walking to the car difficult, that finally convinced me to stay home.

Clearly, I don’t know the magic words we migraineurs can say to ourselves when we’re doubting the “realness” or severity of our illness. How do you remind yourself that migraine is a real, debilitating neurological illness that significant diminishes quality of life? Or, in straightforward terms, how do you silence that voice in your head that yells “FAKER!”?

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.

Health Organization for Pudenal Education. Comparative pain scale. Available at: http://www.pudendalhope.info/node/18 Access April, 2013

Comments

  • Dee
    6 years ago

    I too can relate to your article Kerrie. For me, it’s a feeling of guilt. But then I tried going out a few times with a migraine just to see what it was like and after discovering how “useless” I was, I never did it again. That “trial” allowed me to see that suffering thru it wasn’t worth it. And my family seems to take it personally that I’m not as talkative and energetic. So I’ve decided that everyone’s better off not seeing me with a migraine. We are not ourselves when in the throes. I’ve had friends say “just take a neurofen. You’ll be fine!” If only that were the case. How do you explain the spectrum of other symptoms that neurofen won’t fix?

  • 6 years ago

    What a great article. And it hits so close to home, it’s actually pretty comforting. I’ve experienced this so many times. Thanks for sharing!

  • lk26
    6 years ago

    Like most that responded to your articles, this sounds so familiar. My husband & son are very understanding and supportive of my migraine disease. They live with me and see my day to day struggles. The problem people in my life are my siblings. When things started to get worse & I had to quite work is when they began expressing quilty and even tried to get my husband to sign papers to commit me to a facility for drug abuse. Well now after witnessing a few bad episodes, they admit that all is not right. We are a large family, 5 girls & 2 boys and we do alot of activities together. In August my Mother passed away very unexpected and during the time of planning & making decisions about her funeral arrangements, I felt very left out. Instances like they would tell me what time to be at the funeral home and I would get there on time and everyone had already been there for 15-20 minutes. Things of this nature happened repeatedly. After all was said and done, I voiced my feelings of exclusion and was told that was not the case. Afterwards our relationships were strained to put it mildly. Then in Febuary my brother, 2yrs younger than I died unexpected after one day of hospitalization for an unknown condition. And of course I received the same distant treatment. Recently for various family functions, they limit my involvement, stating that “because of my health limitations”! Now it feels like they are throwing my disease in my face! Like I can no longer acuse them of not accepting my problems and are using it to keep me out. I am beyond hurt, this devasts me. I’ve been advised by my therapist to “divorce my family” in order to change my focus on me and improving my illness. What they are doing is on them and I am trying so hard not to feel quilty about that. What makes it even harder is my niece & nephews, ages 2-8, who don’t understand what is happening. I don’t want them to forget me! But at this time my focus & energies need to be on me. Why is that so hard? Not feeling quilty about taking care of myself. I am really having a hard time with this.

  • Kerrie Smyres moderator author
    6 years ago

    Are your family members or friends willing to go to therapy with you? A few sessions could help them understand what you’re going through as well as teach you all how to best understand one another. “Divorcing” loved ones is a tough road to take, especially when chronic migraine is so isolating to begin with. Please try to stay connected if you can, but also know that sometimes space is what you need to best take care of yourself.

    As for finding others who understand what you’re going through, visiting the Migraine.com forum or other forums can really help reduce the sense of isolation. You are not alone and there are many people who will love and support you in the difficult time.

  • ann-elizabethkay
    6 years ago

    I related to everything you said! My therapist wants me to divorce my parents and non-supportive friends, but I already feel sooo isolated and sad… How can I focus on myself when I’m so busy explaining myself all the time!!! Help!

  • Janet
    6 years ago

    Kerrie,
    Your articles always hit home with me..exactly what I go through to the point where I talk out loud when I read them.

    Easter was the same for me..but my husband still resides in Las Vegas and retires in 2 weeks to join me here in Atlanta. ..side note..don’t think atlanta weather helps me head at all..but oh we’ll.

    My son didn’t understand that yes mom had yet another migraine and I said I couldn’t join his family. He insisted. I declined. Couldn’t drive…the pain, the meds, etc. he insisted he’d pick me up..I said no..thank you. But it’s the baby’s first Easter mom..you can miss that…well he showed up brought me to his house and it was awful, because I felt awful, trying really hard not to puke in his car. Things were being said and I thought I was having tunnel hearing…we’re people actually talking..I couldn’t see…it was unbearable. To make this long post shorter I will tell you something that has broken my heart…this past Sunday my awesome son told me he can’t stand me and my migraines anymore and he’s sick of hearing about them. He doesn’t want me around and neither does his wife. WOW. They begged us to uproot and move from sunny Las Vegas to wet, dreary, damp and humid Atlanta because they had a baby. As I sit at the table typing this post I’m thinking about what I need to pack for my trip to Las Vegas tomorrow to be at my husbands retirement party. As we pondered that decision for the 9 months of the pregnancy and the insistence that we live closer to family and partake in our first grandchild’s life I have tears in my eyes. HE can’t stand MY migraines…ouch. What’s sadder is he’s a migraineur, just very infrequent. Our daughter, his sister, started topamax today because her neurologist said its time, they’re out of control. So in thinking, how soon before she gets shut out also because she’s been asked to move from NY to Atlanta so well all be together. I’m still suffering the same migraine that he couldn’t tolerate….how do we educate our families that we can’t help it. Our son is 30 yrs old and watched his mommy all his growing up years suffer…he used to cry and hug me…thank you so,much for sharing your story…especially the part about the pain level. This time my husband and our daughter will receive the link to,your article as a helpful reminder that it’s not just me….how do we reach our family members who are sick of us????
    Help?
    God Bless
    Janet Jones

  • Kim Martin
    6 years ago

    Your son can’t have everything his way. You moved there at his request. He insisted that you come to his house for Easter despite you told him no TWICE because you had a migraine. Then he doesn’t want to hear about your illness? Then he doesn’t want you around? You don’t have to take this crap.
    I think your son is mad that everything isn’t picture perfect now that you’re living there. When you were living further away & you didn’t spend so much time together, he didn’t have to deal with your illness. Now he does. I think he needs to be respectful of others. If you need to stay home & take care of yourself, he needs to back off & let you. It doesn’t matter if it’s Easter or not. Your brain doesn’t know when it’s a holiday! It’s not like it stops just as it’s about to start a migraine & say “Oh wait, today’s Easter, let’s take day off.” And I think you need to stand up to him & not let him push you around. You need to take care of you. Standing up for ourselves is one of the things that we can do to get the point across that migraine is legitimate neurobiological disease.

  • Vicki
    6 years ago

    Thank you for this article! I can so relate to this! I certainly feel ALL the other symptoms as well, and sometimes, those alone keep me down.
    Unfortunately, I don’t have any friends that have migraine, but sites like this let me know I’m not alone. And because of that, I have the confidence to say that they DON’T know what it’s really like to walk in my shoes, otherwise they would be more understanding.

  • Stephen Rodrigues
    6 years ago

    Hello, this is not an ad.
    I’m a general doc who was trying to figure out Acupuncture but instead found Janet G. Travell, MD. She is the matriarch of pain therapy. She discovered that most chronic pain is in the muscles and fascia. Myofascial tissues is at the core of most pain issues. The treatment of myofascial tissues is called myofascial release therapies. Search myofascial release therapy and start today with your own therapy. Myofascial Release Therapy is the discipline of treating stressed MF tissues. Myofascial release therapy (MRT) includes a lot of well known treatments already used on PT departments. MRTs are on a spectrum from simple yoga, craniosacral, stretching, hands-on manipulations, Acupuncture, dry needling, to finally Trigger Point Injections. It can become the treatment of choice for hundreds of medical ailments.

  • Ellen Schnakenberg
    6 years ago

    Hello Stephen,

    Migraine actually is NOT a pain condition. Yes, pain is a symptom that can sometimes accompany an attack, but it is instead a genetic, neurologic disease.

    I agree with you that myofascial therapies can be incredibly helpful for other pain related disorders. In fact my own daughter is certified in therapeutic massage, specializing in headache patients. I don’t get to benefit from her expert hands nearly enough, but they do not cure or prevent the attacks themselves. They do sometimes make dealing with the accompanying pain much easier however, so long as it can be caught before central sensitization occurs: https://migraine.com/blog/migraine-allodynia-and-central-sensitization/

  • lara
    6 years ago

    Once I got rid of the people who constantly told ME I was faking? I no longer felt like a faker. My problem wasn’t myself but rather the people in my life who couldn’t accept that migraine was a real disorder.

    Unfortunately, one of the people who had to go was my (ex)husband who insisted I was making the whole thing up for attention.

  • Ashley
    6 years ago

    WOW… You are describing my exact thoughts and feelings right now. I took a day off work last week (My third this year) and am STILL beating myself up about it. Was it really THAT bad? Should I have gone to work and dealt with it? Am I really even sick? My current state of mind is so full of self-doubt. Thank you for making me feel less alienated from the rest of society. 🙂

  • Ashley
    6 years ago

    Thanks Nancy and Larissa! I guess I forgot to mention I have chronic daily migraine as well. I try to push through and do my daily routine, but this year I’ve taken 3 days off work and been to the hospital twice for rescue medication. My boss tends to not believe this is legit. He’s the kind of person who gets a “migraine” and takes one Advil Migraine pill and it’s gone. So he really has no idea what it’s like… I guess that’s why I doubt myself at times. 🙁

  • lara
    6 years ago

    On the average, I am down one to two days a week. You’re doing fantastic.

  • Nancy Harris Bonk moderator
    6 years ago

    Thanks for sharing with us ajo708,

    It’s nice to know we’re not alone in this migraine journey.
    Nancy

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Kerrie,

    What a wonderful post. Thank you!

  • Poll