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The Intersection Between How We Look and How We Feel

One of the bizarre components of migraine is that while we may feel as though our scalps are cracked open and bleeding, with daggers lodged in our eyeballs, we may look absolutely fine to the outside world. The contrast between how we feel on the inside and how we look on the outside can lead to confusion on many levels.

But you look fine!

For friends, family, and coworkers, our frequent claims of severe pain may arouse suspicion and a sense of disbelief. After all, how in the world can we be feeling so terrible while looking so normal? The disparity between how we look and how we feel does nothing to dispel the myth that migraineurs are faking pain.

Is there anybody out there?

Other than eying those wearing hats and sunglasses inside, there is no easy way to identify those who are living with the disease. We aren’t wheelchair-bound; we don’t have a scar, we don’t wear monitors. Though there are more than 36 million of us in the U.S. alone, there is no way to identify migraineurs just by sight. While two people with diabetes might exchange knowing glances after seeing each other’s insulin pumps, migraineurs have no easy cues to pick up on.  Migraine is an isolating disease that leads us to darkened, quieted rooms where we labor through extreme pain alone for hours on end. Being able to identify a fellow migraineur in a grocery store, for instance – just to exchange a supportive knowing glance – could make someone’s day.

The eyes have it

That said, for many of us, there are visible signs of pain that accompany migraine (drooping eyelids, watering eyes, etc). Indeed, some migraineurs state that loved ones are the first to alert them to an oncoming attack because they notice visible changes in the eyes. Generally, however, even these signs of discomfort are not reflective of the level of pain being experienced.

It feels good to look good

On the flip side, for those of us who live with chronic or daily migraine, the fact that the pain we are experiencing cannot be seen is a strange gift. Otherwise, our visage would be disturbing to ourselves and to others. Even in the throes of extreme pain, there can be an odd relief to still appear healthy. When we look in the mirror in the midst of a horrific attack, it can be comforting to see that everything is intact, even though it doesn’t feel that way. The veneer of normalcy is an escape from the disease which could not occur if we looked as disturbing and awful on the outside as we feel on the inside.

When our bodies show the pain

Given this reality, it can be troubling when our bodies begin to physically reflect the pain we are feeling inside. I touched in a previous article on the way that migraine can prematurely age us by impacting how we feel inside. I’ve also previously talked about how medication and the cycle of living in extreme pain may also lead to weight gain which may in turn impact appearance and confidence.

Additionally, side effects of medications may cause hair loss, which can be quite troubling to experience. Nausea and vomiting make anyone feel and look terrible and, with extreme cases, may lead to tooth decay. Yet another unfortunate side effect of migraine – and this one can be potentially visible. Over time, we may also find that our posture has changed due to the constant curling up and fighting off of pain—shoulders moving ever closer to our ears.

Who’s looking back at you?

When we begin to see the impacts of years lived in pain looking back at us in the mirror, it can be a real gut punch. Like wrinkles and grey hairs for everyone, these signs are like a road map of our lifetimes. It’s in our hands as to how we choose to take in our visage, I suppose. With pride for our resilience and strength, and some grief mixed in for all that was lost. I’ll choose gratitude that I’m still standing – connected to and with each and every one of you.

How about you? In what way has migraine impacted your physical body? What do you think about the intersection between how you feel inside vs. how you look on the outside? Please share your thoughts in the comment section below so we can learn from one another.

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

  • deedeevee1
    3 days ago

    I’m pretty sure I look as crappy as I feel. My hair has grayed and gotten thin from the meds. I’ve lost two teeth from the almost constant vomiting. The first 8.5 years my clueless doctor gave me steroids so my weight skyrocketed so ummm yea I look just as terrible as feel. Yay migraine!! NOT!!

  • Holly H.
    4 weeks ago

    I have an elderly friend who came dragging in the front of our apartment building, leaning heavily on her walker, while I was waiting for my transportation. She said, “Holly, we may look OK from the outside, but we sure don’t feel OK on the inside, do we?” I responded, “You’ve Got That Right!”
    But since we like to make each other smile when we can, I said, “But, you’ve got to know… There’s just so much good-looking beauty between us, it’s just so hard to bring that down.” Got that smile.
    Then we both gave each other matching “man, this is so hard” looks, and dragged on to our destinations.

  • Holly Baddour moderator author
    4 weeks ago

    What a beautiful human exchange. So glad you shared that with the rest of us. That gave me a smile too. And it shows the universal nature of this issue – it’s not just related to migraine- how any of us looks on the outside is not always (or perhaps ever) entirely reflective of what’s going on within. Goes to show the importance of real human connection. Thanks again for sharing this story.

  • bluesguy
    4 weeks ago

    Hi Holly, I appreciate your positive outlook. I guess I have not gotten to a point where I feel grateful for the struggles chronic migraine (caused by multiple eye diseases and eye surgeries through out my life) has brought to me. We all have such different stories, yet we all have the common thread which links us, and can give us hope, knowing that we are not alone in this.

    For me, I am having a bad migraine day, and a bad depression day. As you said in your great article, we all have loss due to chronic migraine. We lose careers, friendships, significant others, family members, our self esteem, our hope for the future, and sometimes lose our identity.

    As you did say, the isolation and physical and emotional pain can be overwhelming some times. People in our lives don’t understand how we could be so sick. “It’s just a headache” they say. ” You can’t be that sick. You look okay to me.” These kinds of statements only add to the isolation we feel. They eat away at our self esteem. They lay guilt trips on us, when we already give ourselves guilt trips for our short comings in life. I am particularly hard on myself, and feel like I have failed so many people. H-ll, I have failed myself. It is sad to feel like this. I am losing my thoughts. Thanks for sharing another article that so many of us relate to. I hope you are as well as possible.

  • Holly Baddour moderator author
    4 weeks ago

    Dear @bluesguy– I always love hearing from you and am grateful for the way you stay in touch – even when the pain is getting you down. I’m so sorry you are having a rough time. You are not alone in this- you know we are all in this together. This journey is so challenging but can be made easier when we connect and remember there are others who are in the same boat, navigating the same waters.

    On some of my hardest days, I picture others like me, pulling themselves out of bed just to feel the heaviness of their heads- waking up from a bad night sleep only to realize that this, again, will be another tough day to manage. Even though I’m alone in my house dealing with this level of severe pain, it helps to picture the thousands of others who are taking the same careful steps (ball of the foot first, heel last- tiptoeing along)- so as not to jar their heads with more pain. Of course, I wouldn’t wish this pain on anyone, but knowing I’m not alone somehow lifts a weight off my shoulders. And coming here, to migraine.com to connect with people like you makes the load even lighter.

    The dynamic of guilt is a huge one! I’ve written articles on that very topic. It’s all-encompassing and easy to get sucked down that rabbit hole for sure. https://migraine.com/living-migraine/guilt-trip/

    While I don’t want you to be feeling like you’ve failed yourself, or anyone in your life, I want you to know that I’ve felt that too. We all have. And it IS sad to feel like this. It’s also totally normal to feel this way. The truth is you haven’t failed anyone. You have a neurological disease- a very complex one that has made it impossible to function in the way that others do. It’s the disease that has failed you and has gotten in your way.

    Sometimes it’s just not possible to see the bright side of this demanding disease. On those days, it’s important to reach out, just like you have here- to connect, relate, and ask for support. https://migraine.com/living-migraine/turn-corner-when-feeling-down/

    Not to change the subject too much here- but are you working with a specialist to try any of the new treatments that are available? The CGRPs? I know they are providing some relief for a percentage of folks out there. May be worth talking to your doctor about…https://migraine.com/cgrp-new-direction-migraine-treatment/

    Again, so glad you shared- and please continue to chime in and stay in touch. Thinking of you.

  • Rylee55
    1 month ago

    I don’t know if I’d say it’s fortunate or not, but no one has ever told me that I didn’t look sick. As a matter of fact, I can tell that I’m going into a migraine face because my skin starts looking a ghastly gray color. because of that, people will ask me “hey, are you all right?”

  • Holly Baddour moderator author
    1 month ago

    Interesting, @rylee55– for some of us, it takes our friends and families to let us know that a migraine is afoot. For some, migraines DO show so obviously on our faces that others will tell us before we even know an attack is on it’s way. Has that ever happened to you? https://migraine.com/living-migraine/visible-symptoms-showing/ Just goes to show how this disease works so differently on different people. Thinking of you.

  • glassmind
    1 month ago

    I have saved a few images of artwork that represent the pain of migraine (from beautiful yet sad ones to more gruesome images) that I use as a response when answering texts to loved ones or in response to a missed call.

    (When I can use the phone at all.)

    This discussion makes me consider printing one as a badge to wear with the caption “How I’m feeling right now.” Lol

    Maybe I’ll make a new pocket medical card with such an image on the reverse?

    When my doctor first asked me to describe my migraine pain, I said, “It is like a grenade made of glass has frozen mid-explosion inside my skull”, while placing a clawed hand over the right half of my head.

    She said “Yep, that’s a migraine.”

    The pain descriptors and images people who experience Migraine use leave no doubt: invisible, bit extreme.

  • glassmind
    1 month ago

    The bandaged head emoji just doesn’t cut it for representation.

  • dalindra
    1 month ago

    All of us know that pain is mostly invisible. I have had even ER doctors tell me that I look fine. I explain to them that I have to work throughout the day with a migraine and I have to look as normal as possible to my clients and co-workers. I see the difference in my aging face. I am a happy person beyond my migraine pain but my face is aging into a sad or distressed persona. My lips slightly turn down and I have deep dark under eye circles. I have stress wrinkles at the bridge of my nose. What is reflected in my mirror is pain. To me, I don’t look fine at all.

  • Holly Baddour moderator author
    1 month ago

    @dalindra– first, I love your username- beautiful. Second- your post made me think of an article we have about the way migraine ages us- prematurely. It’s a topic I think many of us can relate to, unfortunately. The pain pulls our expressions into places they wouldn’t otherwise land and holds our faces there:https://migraine.com/living-migraine/when-migraines-age-us/

    Just wanted you to know you’re not alone in this. Glad you brought it up. Thinking of you.

  • glassmind
    1 month ago

    Indeed. A general look of aged sadness. I more often get told “You look sad/upset.”

  • LAnnSmith
    1 month ago

    I’m in the Rarely category of people telling me I look fine. When I get a migraine, it’s all over my face. I already have Horner’s Syndrome so one side of my face droops slightly, but when the migraine hits the face goes wonky. Plus I get the fog aphasia and exhaustion pretty quickly, It affords me the opportunity to get home where I can medicate and rest, without a lot of explanation.
    Having read Glassmind’s comment I have to agree with her. I believe I’m more aware of other people’s struggles and do my best to help whenever possible. Paying things forward or jumping in as needed are my greatest joys.

  • glassmind
    1 month ago

    LAnn, What a challenge you have. Yet, it is nice to read that you, too, have been able to tap into deeper compassion through your own pain. May you have many joyful days.

  • Holly Baddour moderator author
    1 month ago

    hi @LAnnSmith– During an inpatient stay at a migraine clinic, my roommate had what you describe- her face drooped dramatically every time a migraine hit- almost looked like a stroke. Add aphasia to the mix and you’re right, there’s no hiding the fact that you’re dealing with a serious neurological condition.

    I so appreciate the way you’ve chosen to see and be grateful for the gifts that this disease has given you- compassion, key among them. I couldn’t agree more. It helps us get out of our challenges to lend a hand to others in need.

    So glad you’re a part of our community. Thanks very much for chiming in and please do stay in touch.

  • Naomi
    1 month ago

    Definirly a good topic for discussion!
    Rather than ‘fine’ I got told good/ great quite a bit while I was still seeing people at work and I would say about my condition. More often i just see family or strangers now so just don’t get the opportunity to have it said to me. Because I look young (I’m told!), speak well and I’m slim, i think people find it difficult to comprehend. I often find strangers saying ‘well its ok, you’re young’ and i just want to scream at them!

  • Peggy Artman moderator
    1 month ago

    @Naomi, thanks for sharing your thoughts on this story. It’s definitely a good discussion topic. So many people complain that people say they look fine when the reality is that they are in pain. Age-related comments can be especially hurtful too, especially if the pain has caused premature aging. It’s a lot to deal with. I hope you are having a low pain day today.
    ~ Peggy (Migraine.com)

  • glassmind
    1 month ago

    As you said, it does feel good to look good. I have multiple chronic conditions. It takes so much to get groomed, dressed, and out of the house and I take pride in being able to look nice. It’s a small bit of dignity.

    And when people say “You look nice” I’m genuinely grateful and say “Thanks, I tried.” Which usually gets a laugh. The human connection is nice. It’s treasures because so rare as housebound often.

    That said, close friends and family do notice the early stages of migraine. They see the weariness creeping onto my face, the light leaving my eyes, and hear the change in my speech and cognition.

    On good days I seem as light, vibrant and happy as I feel. But on those bad days, I do look heavy, dull and sad.

    I live in a fairly small town and visit the same shops, grocer, post office, etc. regularly, so even the folks who I know from these places may notice my slower pace and ask simply “Are you okay?”

    Some know of some of my physical ailments, some of migraine. It’s nice to be recognized and asked.

    It may be something rare to small towns.

    If I end up somewhere new or arround new people, a dour look on my face is just one of many. Maybe I’m a grumpy person. Maybe I’m having a bad day. I’ve had passing strangers say negative things when I failed to light up with a smile and return greeting.

    I do try to keep a smile through rough times.

    It seems a small thing I can do to keep my own morale high and brighten others’ days.

    But a smile is sometimes just out of reach.

    For me, more than having someone see my “invisible” ailments, I’d like them to have compassion when they are visible.

    A hidden blessing of sufferring is compassion.

    Knowing pain so intimately, I am quick to slow down a hurried transaction and genuinely ask a clerk “Are you okay?” I’ve hugged many a stranger in public who looked like they were having a bad day and said “Yes” when I asked if they wanted a hug. I’ve walked a stranger home experiencing heat stress just to make sure they made it. I’ve entertained the kids of weary adults in waiting rooms.

    I’m quick to assume that someone else’s sour mood or face has nothing to do with me and internally wish them well.

    And I’m ever so very grateful for all the friends, aquaintances, and strangers who have done the same for me.

    I encourage us all to be honest and compassionate.

    Let your illness be visible when you could really use some sympathy or help. Explain politely, “Yes, I’m smiling and I’m in great pain.” Raise awareness when you can, and save the battle for your own health when you must.

    And look for the light in others’ eyes. If it’s missing, be brave and ask “Are you okay?” Sometimes, the recognition and asking is enough.

    Thank you, Holly for another thought-provoking, awareness raising article.

  • Holly Baddour moderator author
    1 month ago

    @glassmind– this is once again a beautiful and thoughtful comment. Such a keeper and worth seeing by more than who will read this piece. It did make me think of this article: https://migraine.com/living-migraine/visible-symptoms-showing/ – but on a larger scale, your point about compassion- your CALL for compassion- is something I’d really like to encourage you to post on our stories page, if you’re moved and open to doing so. It’s really something I feel is worthy for more people to see, read and take in. If doing so speaks to you, please consider reposting, or repurposing in some way here: https://migraine.com/stories/

    As always, so grateful you are with us on this journey.

  • glassmind
    1 month ago

    Thank you, Holly.

    Will do. (:

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