How Do You Want to Be Seen?

How Do You Want to Be Seen?

Recently, I gave my first public talk about migraine to a group at our local university. I only had a very little bit of time, so I decided to talk about language, and the fact that the way we discuss migraine is changing. At our conference last March, all the migraine advocates gathered and Katie referred to the article by Dr. Bill Young about language contributing to stigma. That’s why you won’t find many of us using the term “migraineur” anymore, and you will see migraine “attack” (rather than “I have a migraine”) and migraine “disease.” Words are important.

Migraine is often invisible

Another stigmatizing factor is that migraine disease is often invisible, especially on days when we’re not suffering attacks but have postdrome or prodrome; allodynia; brain fog; nausea; or any of the multiple other symptoms we suffer all the time. Because migraine brains are different. We see differently, we hear differently, we feel differently. Often it’s nice to blend in and not be identified only with our disease. Who wants to be known as “that lady with migraine,” or worse, “that girl who always seems to have a headache,” along with the requisite eye rolling?

When others don’t always understand

On the other hand, it can be a problem when people don’t remember or keep in mind that you’re sick. I have a friend, L, who doesn’t seem super comfortable with my migraine disease; when I’m down for a week, posting on Facebook about my pain level or an ER visit or how frustrated or sad I am, and then finally feel better and return to the world, it takes her a while to warm back up to me. She may ignore me and not meet my eyes for a day or two, while others will wrap me in warm hugs, say they were praying for me, or they are so glad I’m back, and that I should let them know if I need anything. So with L, I don’t push it. I understand that illness may make her uncomfortable for any number of reasons, and that’s fine. She’s generous and kind in many other ways.

Trying to pull through

But last week there was a big misunderstanding. The kids in our group were competing (I’m trying to be a little vague here), and the results were a bit of a shock to everyone. X was absolutely devastated. L’s kids came out ahead in the situation. It did take X quite a few days to recover; she’d already been experiencing some depression and this disappointment seemed to destroy her. At the first gathering, after nursing X through her intense twelve-year-old devastation (twelve is just the worst age to be), insomnia had kicked in and I had slept only an hour or two in four days. I focused on what I needed to be doing, and held on to the sides of my chair and tried not to fall off of it. My heart was pounding, my face was flushed, my stomach hurt. My eyes prickled. I had a unilateral sleep-deprivation headache. I didn’t really speak to anyone, and I probably shouldn’t have come at all, but I was supposed to be there and I try to let people down as little as possible. 

Being misinterpreted

It must have looked like I was pouting and giving everyone the silent treatment. I took it for granted that most people there, all friends, would know I was suffering and would understand. But when I get home and was trying to get the girls ready for bed, I was alerted to the arrival of a Facebook message. L had interpreted my pained silence as giving her the cold shoulder because of hurt feelings. When I explained about my insomnia, the response was that she wouldn’t treat anyone that way no matter how much sleep she’d lost (although of course, she does, when I have been particularly ill, but I chose not to point that out). And insomnia is a crazy beast. It makes your brain turn against you, it’s a similar feeling to being drunk, or like a waking dream. Plus it is comorbid with migraine and a common trigger, so the less sleep, the more pain. I didn’t know what to do. I explained myself again, and yes, I was a little defensive. Nine days later and we’re still not speaking.

More than just my disease

How do you want to be seen? How do I? Do I want to have people constantly thinking “sick sick sick” every time I’m around? Do I want to have to wear a sign listing all my current symptoms? Of course not. I would like the people who know me well to keep migraine in mind, and remember when necessary, like at that particular gathering. Realizing I might be feeling awful rather than deliberately treating a friend badly because our daughters had been competing (honestly, not like me at all). I don’t want to be seen as not “normal” and only identified with my disease. I want friends to think of me as funny, warm, kind, intelligent. But a little empathy for my situation would still be nice. Sometimes it’s a very fine line.

Have you ever lost a friend or had a similar misunderstanding occur due to migraine? Feel free to share in the comments.

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 (27)
  • RobinfromCA
    10 months ago

    I have to say that, since this is the same person who is completely unsympathetic when you’ve had migraine in the past, she’s just not a very sympathetic person in general and not a good friend. I wouldn’t stress over this. Treat her the same way you’ve always done and let her work out her own issues. You’ve explained and there is no reason to make yourself sick again by worrying about someone who is creating her own drama. I think the only thing any of us can do is take the high road. We may lose a friend along the way but how good is a friend who only supports you on the good days?

  • Elizabeth Roberts-Zibbel moderator author
    10 months ago

    Yes, I agree Robin. This happened several months ago now, and we are not as “close” as we were before this happened. We made up, and can be kind to one another, but I would call us acquaintances, not friends. I’m sure it’s better that way.
    Thank you for reading!
    ~ elizabeth

  • aks868
    1 year ago

    Dear Elizabeth,
    I completely empathize with your situations. I had a friend, a close friend I thought, who never calls or visits anymore. When my migraines became overwhelming, she just dropped me from her life even after I suggested ways to get together, such as morning walks. First I tried explaining to her that friendship is like a flower and needs water and sunshine and that I am trying to give ours that. Then I was angry and resentful. Then I just accepted it. Next, I tried reaching out on a good day and stopping by on a walk. After still not hearing from her, I am just sad that she is unable to be a friend on any terms other than her own.

    In contrast, I have other friends, who know that when I don’t immediately call them back, it is because of a migraine or because I am overwhelmed with trying to catch up after an attack.

    As the years have passed, I have changed also. I don’t want people to always ask about my health. It is a boring topic. I want to be recognized for and socialize on terms other than how I am feeling. Again, this is a fine line–as you mentioned. I don’t want to be the “sick one,” but I would like a little latitude when people judge me, which means that sometimes I have to say I am sorry. For instance, I have a great friend who was there for me during a crisis with my son while I was in a migraine crisis of my own. I thanked her for her help, but neglected to keep her updated on the situation. She mentioned she wished I had called her, and I apologized profusely. It WAS my fault. If someone is there for you, they deserve to know when things are better.

    So in general, I think walking that line means admitting when I am wrong as well as seeing when people are not living up their end of the friendship- relationship.

    Thank you again for your essay.

  • Marina
    1 year ago

    Sorry, in the last paragraph I mixed up the first two sentences when proofreading. It should say:

    “One more thought. I have never felt a stigma regarding my migraines. Never. Unless it is quite obvious, I actually do not advertise my migraines unless someone causes me more pain than I am already suffering so in the end people usually find out.”

  • Marina
    1 year ago

    First of all, I despise labels. I also despise making something more than it is. A migraine headache is a condition that can be chronic and is not an organic disease. A disease is a particular destructive process in an organ or organism, with a specific cause and characteristic symptoms. People recover from migraine headaches. I am not going to make it more than it is. It is a temporary condition for most who suffer from them and once it is gone, the mind and body are back to normal. I do not need to get dramatic about calling my migraines, which are chronic, an attack either. It is the mother of all headaches and when I have a migraine I make sure everyone who is in contact with me knows I have a migraine, because I am not a nice person when I have a migraine headache and do not apologize for my condition. I want to be left alone, and I do not want anyone’s advice about my migraine headache since I have researched migraines for over thirty years and the people giving me advice have no clue to my experience with treatments.

    I tell everyone that deals with me, “Don’t take it personally, but I am suffering horribly from a migraine and I have no intention of being a pleasant person when I am feeling such intense pain, light and noise sensitivity, nausea, and am having a lot harder time working because of the ice pick throbbing above one of my eyes.” Just leave me alone and I carry on in the best way possible.

    People do not think of me as weak but very strong since I am confident and do whatever I can to still function within reason and expect no one to baby me. All migraine sufferers have to be strong and secure about their condition. I just want to be left alone, will bark at people to leave me alone, if necessary, and do not expect any sympathy from them, only consideration.

    I have always, and will always wish that every human being could experience a migraine just one in their life so that they may understand the extent of a migraineur’s pain. (By the way, I like to call myself a migraineur since it has a noble ring to it. I let no one rule how I view myself.) Because of how I view myself with such strength when I am suffering beyond belief, I have attained the respect of others who never experience a migraine or even an ordinary headache in their lives. And to those who say to me they have a migraine when they are not experiencing even an ordinary headache but use the word to describe a ‘hectic’ situation? Well I have no problem telling them,”Oh no you don’t have a migraine!! You could never be walking without swaying slightly and talking without slow speech or perhaps a slur or annoyance in your voice or keeping your eyes unshielded if you REALLY had a migraine!!!

    As I said, I don’t like labels and I call things what they are and do not need the drama to reveal my chronic condition. I suffer from chronic migraines, have learned to live with them and learned to prevent them in the best possible way. I don’t need to advertise them because everyone around me knows I experience them. I am one tough person and have never let migraines make me feel inferior.

    One more thought. Unless it is quite obvious, I have never felt a stigma regarding my migraines. Never. I actually do not advertise my migraines unless someone causes me more pain than I am already suffering so in the end people usually find out. Sometimes it is best to carry on in some situations without alerting others to your pain since they can not help you anyway. Your best defense against migraines is yourself and determination and I have lived my life doing the best I can to prevent them and when I do suffer from them, I do the best to avoid involving anyone else.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Oh wow Marina. Well, good for you for being so strong and having such success with that. To each his / her own, and what works works! Take care,
    elizabeth

  • aprice4
    1 year ago

    Ah yes. To reveal or not to reveal? — that is always the question.

    I struggle with this question frequently. Will this friend use my condition as a reason to view me as weak and frail, which I most assuredly am not? Will this employer fear that I will prove to be undependable, absent or unproductive, which I most assuredly am not? Will I sound as though I’m making excuses, playing for sympathy, or creating unnecessary drama, which I most assuredly do not?

    The answer I have come to in every instance is a clear, straightforward, unequivocal, “It all depends.” It depends on the circumstances, on the person and on my instincts. Sometimes the signals are fairly clear from the outset whether or not it’s safe to reveal my condition. Sometimes the only way to find out is by revealing and then watching what happens.

    Then I have to be willing to accept the results.

    I’ve been lucky: A rather large number of my acquaintances have surprised me by displaying the appropriate mix of empathy and respect for the way I have managed to live a highly productive life.

    Others — including some close friends and family members — have hurt and betrayed my trust in various ways: by blaming me for my condition, by judging me for having it, or by rejecting me outright because of it. Quite a few people have offered frivolous “remedies,” such as proper diet and exercise, with the implication that this is a minor affliction with a simple fix, and that I am simply not smart enough to have tried it already. In all instances, I’ve learned that another person’s response can never be taken as an accurate judgment on my own character. It always says far more about the other person than it does about me.

    Anyway, thank you for this article and this newsletter. I appreciate having a forum like this to discuss our daily struggles.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    You’re welcome, aprice, and thanks for sharing your struggles and being so empathetic about mine. I get that a lot too, the feeling people think i’m Just not trying hard enough to conquer the illness. It can definitely be a lonely place, and i’m glad we can support each other here. Take good care! ~elizabeth

  • MidrinMan
    1 year ago

    I do not avoid your gaze, I desperately deflect my igneous eyes.
    I do not ignore your words, my ears entreat refuge.
    I do not mock your food, my very saliva sets my throat a flame.
    I do not turn up my nose at you, your seductive scent rapes my brain.
    I do not recoil at your touch, because the gentle wind tears at my flesh.
    I do not have the energy, for trivial emotional skirmishes.
    I am at war with my senses.

  • sbailey61210
    1 year ago

    MidrinMan: Thank you for putting into words what so many of us cannot. This is exactly what it is like and your words make me feel less alone on my really bad days.

  • sbailey61210
    1 year ago

    Thank you for putting into words what so many of us cannot. This is exactly what it is like and your words make me feel less alone on my really bad days.

  • DivinePK
    1 year ago

    “your seductive scent rapes my brain.”

    I don’t know, I’d rethink this bit.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Thank you Todd Fox. It seems serendipitous – my younger daughter’s middle name is Fox because my husband is descended from Foxes on his mom’s side. What a gift you have! Thank you again! ~elizabeth

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    MidrinMan, this is gorgeous. Did you JUST write this, or is it something you created before? I love it. I’d love to share it, too, if you ever want to give your name and permission. Thank you so much for sharing it with us, here, today. I’m grateful. ~elizabeth

  • MidrinMan
    1 year ago

    I wrote it.
    Just then

    Permission granted
    Share away.

    Todd Fox
    Salem,Oregon

  • Holly H.
    1 year ago

    It’s So Hard, isn’t it?!! If we don’t explain, we are rude, stand-off-ish, unfriendly, etc, etc.
    If we do explain why we can’t go or do right now or even answer the how-are-you-today question, if we would just get our minds off of ourselves, it wouldn’t be so bad. “I was a nurse (LPN home health) for 43 years, and I’ve never heard of a chronic migraine condition like yours.” To which I replied, “That Does Not Make It Not So.”
    Same friend today, and, mind you, this is one of the understanding friends, ordered me to quit making everything medical, that everyone deals with the effects of aging, that I am not medically special. Still showing, of course, that she totally discounts the chronic/constant migraine disorder with aura, because if she’s not heard of it, it doesn’t exist. Sheesh I am so very tired.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    YES! We’re stuck between a rock and a hard place, socially. Rude and avoiding, or “making it all about us” and our “medical problem(s).” I also have the experience of my most understanding friends occasionally still not getting it. It never ends. Thanks for your comment Holly! Take good care ~elizabeth

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Update: I am happy to report that the “big freeze” is over and L and I are okay now, thanks mainly to our daughters. We didn’t discuss anything, just let things shift back to “normal.” I learned a lot from this experience I think and am sort of glad it happened. Now that it’s over. Thanks for reading! ❤️

  • Candy Meacham
    1 year ago

    I understand your desire to have those around you, friends, other parents, family etc, see and know what you are coping with. I have a friend I’ve grown away from in part, I think, because she just doesn’t get it. However, over the years with this disease I’ve mostly learned not to spend much energy on how I want to be seen. I’m clear that I do the best I can. I explain when I feel like it will help and the leave it up to others to see what they will. It’s not that I don’t care, but trying to manage other peoples feelings drains my energy.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Thank you for your thoughts, Candy! It’s not necessarily that I want everyone around me to know or be thinking about it – the opposite in fact – but this incident made me realize the downside of that. I’m so glad you’ve reached a point where it matters less what others think or feel.

    Take care,
    elizabeth

  • parmes
    1 year ago

    I ended up marrying the one person in my life who understands how bad this actually is for me.
    Everyone else in my life basically assumes that because I also have Complex PTSD, that I must be actively pushing them away and snubbing them (actively, ha. Don’t get me started on that one). Which on some level, in some situations, certain people, whatever. But migraine attacks make up for so much more of my anger, my “stuck-up attitude”, and my silence.
    I don’t know how many times I’ve just wanted to turn to someone who I thought cared about me, spouting off that crap, and just scream in their face… “You think I chose this? You think I chose any of this, the spots of little to no vision in my eyes, the forever pounding head, my ears ringing constantly, never being able to get warm, always nauseously eating tiny meals yet feeling starving… Should I continue because there’s more! No?! Then back up and let me suffer through it!”
    But of course I can’t, because then I really would be crazy.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Hi parmes,

    I SO understand what you are talking about. My partner and I both have PTSD as well. There definitely is a connection between PTSD and migraine (especially in men, apparently, which he is) and we are the living proof. Both illnesses do make it so much harder to interact normally with
    people. I’m so glad that your spouse “gets” you, as mine does. And you have all of us on migraine. com too! Thank you so much for your comment. Best Wishes, elizabeth

  • parmes
    1 year ago

    Thank you! I’ve honestly been wondering what came first at this point. The first traumatic event for me was at 4 years old, then again at 13, and so on. According to my mother (and my grades) I’ve had chronic migraine since at least 10 years old. On top of all this I’m also epileptic. So honestly I never know what exactly is effecting me at what point: am I feeling a seizure aura or a migraine aura? Or is this an emotional flashback? It’s really a mess.
    Anyway thanks again for your kind words. It’s nice to vent at someone who isn’t my hubby.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    That’s what we’re here for! I am sorry to hear about your seizures; wondering which neurological disease you’re being affected by must be so stressful! I’m so glad you have your husband for support. Take care of yourself

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    …and feel free to stay in touch and let us know how you’re doing! <3

  • Lori
    1 year ago

    Boy, can I relate to this. I only have ONE single friends who remembers or is cognizant of the fact that my migraine disease affects how I act on any given day or at any event. I’m mostly always in the middle of one of the phases which negatively influences my ability to socialize. Plus there’s always noise level, liights, and just constant input of people talking, echos, boots clomping, stuffy air, too hot, too cold, and other sensory assault. Going out in public just seems so impossible some days, even when we don’t add the necessity of interacting with others who misinterpret our behavior. No wonder we become hermit-like and stay at home and become lonely.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Lori, thank you so much for your supportive comment. I have been so lucky in that most of the people in my life understand or just give me a little space. Sometimes people drift away, but I never know if it’s bevause of misinterpreted signals / symptoms. This situation with L, which was dealt with more aggressively than i’m used to, is STILL ongoing and it hurts a lot. I’m sorry that you have only one understanding friend. The isolation can be as difficult as the pain. Remember that you are not alone, Lori, we care about you here! Best Wishes, elizabeth

  • Poll