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Fear of Sharing How I Feel

Every month I write many essays and blog posts about living with migraine disease. At the end of each month, I pick six of the posts that I think will resonate most with Migraine.com readers. Sometimes I post provocative things, other times I simply vent. Sometimes I focus on a particular trigger or remedy, and sometimes I just let people into my personal life to show a little bit about what it’s like for me to ride this migraine roller coaster.

Most of the time, sharing my thoughts with readers feels freeing and validating. Even when people respectfully disagree with what I have to say, I usually feel as if we are having a meaningful dialogue, a great conversation in the most egalitarian sense of the world.

But tonight I feel different. I feel scared, and lonely, and afraid to share anything at all with the thousands of people who might stumble upon these words.

You see, I got such hurtful comments on my last Migraine.com post that I am afraid to submit my blogs for this month. I tried to be honest with the way it feels sometimes to date a fellow migraineur, and some readers were supportive. Others reacted hatefully and are rooting for Jim to leave me. These are people who don’t see how much we love each other, how much we care for each other even when we’re tired and frenzied and can barely take care of ourselves. I was accused of not being a “real” migraine sufferer (whatever that means), which is unbelievably painful to experience.

Now I feel frozen, afraid to share my writing again. I love the social nature of blogging, but right now I’m at a standstill with only a few hours before deadline. Which of my blogs should I edit & share this month? Which ones should I keep hidden for fear of readers’ feedback?

Those of you who know me know how much I love Jim and how much I struggle every day with my migraine disease. Why does it matter what others, others I’ve never met and never will meet, have to say? Why do I care so much about whether they have any concept of what my relationship is like and how much J. & I love each other? Why do I compose response after response only to delete each one for fear of the reactions it will provoke? Do I just ignore the entire episode?

Blog post after blog post, I put my heart on my sleeve. This time around I shared something unflattering and true about myself, something I am seeking advice on, only to be received in a wholly unsympathetic way. And now I feel timid and sad and quite unlike my Migraine Girl self.

Thanks to all of you for reading. I expect my other posts will be a little more light-hearted now that I have gotten these words out. My nerves feel pretty raw at the moment, so if you would treat me with kid gloves if you do choose to comment below, I’d be most grateful.

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

  • body
    6 years ago

    I haven’t read the posts you are talking about but I have read some of your others. the following quotation helps me when I’m feeling just as you are now:

    “I will not let anyone walk through my mind with their dirty feet.” -gandhi.

    I will share on my FB page so Teri, Ellen, or Diana can share with you.

  • Nancy Harris Bonk moderator
    6 years ago

    Thanks for sharing that with us Sharron. This was a difficult one for Janet as she said.
    It sometimes seem the more we put our heart out there, the more it gets crushed.
    Your quote is wonderful! Thank you

  • Teszla
    7 years ago

    I read the previous post, got angry on your behalf, felt so much empathy for you, but ultimately did not post a comment because I could not add anything to the conversation. I understand where you are coming from right here, right now. I’ve been in a similar situation, and dealt with it by … not dealing with it. I shut down. I drifted away from friends and family because of it. I can’t recommend that course of action, although I did find out who my true friends were (including family).
    I am a lurker, I admit it. I read every post, but this is my first comment I believe. I’m so happy that I stumbled across this website though, because it helps me to understand my migraines (they started about a year ago, I’m 40) and helps me to make it through.
    I have such a loving and supportive family, my husband is one in a million and both my sons support me however they can. I couldn’t make it without them. Do I get short tempered with them when I’m not feeling well? Yeah… I’m human. Do I have a hard time dealing with their being sick and I’m … sortof ok? Yeah. That article struck a chord with me in a big way. But do we love each other no matter what? Of course. Just like you and Jim obviously love each other.
    (((((hug)))))
    Keep going, keep the posts lighthearted for now if it helps, but please, please know that even the dark posts help so many of us.. . sometimes just when we need them.

  • sheri2u2
    7 years ago

    Migraine Girl,
    I admire your courage for sharing how you feel. I completely understand why you feel the way you do. Being a migrainer it’s overwhelming enough taking care of ourselves. The thought of taking care of anyone else is to me, more than I can comprehend on most days. It’s not that you don’t have empathy it’s just that some days we are so overwhelmed with our own pain how can we possibly deal with anothers.
    Bless you for sharing.

  • janmacy
    7 years ago

    I just went back and read your post and comments. Pat yourself on the back for having the courage to put forth such a brutally honest post and then asking if anyone else had this same issue.

    It was a courageous move on your part. You can say what you want and we should respond honestly and kindly. We all need self-awareness and you helped us to look at ourselves as caregivers.

  • marlene
    7 years ago

    When will the medical community stop referring to migraine as “headache.” It is a neurological disease and needs to be treated as such.

  • Julie
    7 years ago

    That is so true Marlene. The Medical community itself is adding to the Stigma of migraines by calling them “headaches” when they of all people know better than that! And those commercials of those OTC medications of Excederin touting they will get rid of your toughest Migrianes. Oh pleazeeeeeeeeeeeeeeeee

  • Sara
    7 years ago

    I missed your last post, but I just read the post and comments. Wow. I wish I had posted – I have the same problem. My boyfriend is not a migraineur, but sometimes I just don’t have any empathy for him at all. Even though I have chronic daily migraines, he has never supported me financially. In fact, I lend him money. I have had to keep a full-time job, because my disability was denied. BUT he supports me in other ways. I work for his company, so I have flexible hours. He is emotionally supportive (most of the time). But we both get mad at each other for not being supportive enough. It’s called being independent and normal. Do I wish that my boyfriend would work two jobs and bring in enough money for both of us, so that I can stay on the couch for all the hours of the day instead of most? I guess, but honestly I think I would end up feeling worse in the end. Not having some super dude at my beck and call 100% of the time has made me stronger, kept me in the workforce, and made my boyfriend admire me all the more. He’s so proud of me after my nerve stim surgery that he’s throwing me a party! Sorry this is rambling! But it brings up a lot of issues for me.

    Also it reminds me of the time we both got a really bad flu from an airplane ride home after a vacation. We both were literally zonked out at the exact same time and couldn’t take of ourselves or each other. We just had to muddle through it without getting too angry at each other. I believe this problem probably exists in all relationships. I’m sure our caregivers aren’t 100% supportive at all times, even if they never say anything -the super dude or super gal that supports Migraineur’s just doesn’t exist. I wish my boyfriend would put his dishes in the dishwasher, he wishes I wouldn’t leave my soda cans all over the house. Etc, etc, etc. I wish I knew what to tell you about all of this, but I want you to know that you have my support and I feel the exact same way at times. And I admire you for putting it out there. Honestly I don’t even see what the big deal is. I would gladly admit to not being as supportive of my boyfriend’s problems as I should be. It’s just something I continue to work on. Hell -we’re not perfect. And don’t forget, we have a disease. We’re in pain all the time. How the heck could we ever be perfect or even close to it? You go girl. Keep posting honestly. Keep putting it out there – I for one will listen.

  • Julie
    7 years ago

    So sorry Sara. I hope your boyfriend realizes what a gem of a girlfriend he has in you and hangs in there with you and continues to support you.

  • Sara
    7 years ago

    BTW, my boyfriend gets damn sick of me, migraines and everything else, and I still consider him a great caregiver. I’m sure your man feels the same about you…

  • nella
    7 years ago

    You can’t judge anyone until you’ve been in their shoes. You are a patient taking care of a patient when J feels awful. Don’t let anyone be so hard on you. Give yourself a break. You’re dealing with what you are dealt and doing your best. You are not at 100% and therefore, cannot be expected to give 100%. You keep sharing and we’ll keep reading!!!

  • Ellen Schnakenberg
    7 years ago

    Most who write online eventually are confronted with a troll or bully. There may be very good reasons for their reactions, but it would be nice if being online didn’t remove filters so easily.

    Three words keep me going when things go awry as they sometimes do…

    Consider. The. Source.

    When people who know you and J personally start making such comments, it’s time for a heart to heart. When people who don’t know you step in to bully, just remember who they are and where they’re coming from as well as their intentions. Forgiveness is important – we can’t know where they are in their disease when they wrote – but those who support and understood your comment far outnumber the outspoken few who didn’t *get it*.

    I also know you – you would never let the rest of us down for the actions of a few trolls. <3 You are one of the bravest people I know.

    Sending ((Hugs)) of neverending support....

  • arden
    7 years ago

    It seems these migraines make us super sensitive to pain and that includes emotional pain. Thus we cry in prodrome and often during the pain crisis. We focus much energy on finding ways to reduce or alleviate the migraine. But after reading your post I see we need to focus as much energy on healing our emotional/spiritual selves. Who needs hurt feelings on top of all the physical distress we encounter? Sometimes we can write off our emotional distress to the migraine and hope for more stability when its gone. But the truth is we need to work on gaining confidence and a sense of our own worth all the time. I guess what I’m saying is that if you had more spiritual power and/or health you could have chosen not to be offended and hurt by negative comments. I am not criticizing you or blaming you here. We ALL need to increase our health and power in every way possible, not just the body. I hope we all find a way that works for us and can then help those who need a boost. With love.

  • Julie
    7 years ago

    I didn’t read any of those hateful comments either. But you should never feel afraid to say how you feel and you should never let those pathetic people Intimidate you. That is all it is, intimidation. If they can’t bully you in person then they bully you online. Some people never learn to grow up and they immature and unhappy in their own pathetic lives and they think they can make themselves better and make themselves happier by picking on others and bringing other people down. Don’t listen to them! If they have negative things to say, don’t take it personally, just look at who or what it’s coming from and just delete it. Your posts help so many people because they can relate to what you are saying. And for those being negative, well if they cannot relate to what your saying and identify with it then they can just go blow bubbles up their own rumps and go fly a kite somewhere else and leave you alone-they have no business making comments on your post or anyone elses for that matter. Bullying has no place anywhere-in person or online. They should be totally embarrased by their actions and if not then they have no soul and no heart. Do NOT let them intimidate you. Don’t let the hatemongers stop you from being honest. Keep writing from the heart. Reading your posts is what gets a lot of us migrainers going through the day because a lot of us can relate. And if those undesireables respond again I would block them if you can, or ignore them and go on. You are valuable to this community. Go get ’em girl!!!

  • Julie
    7 years ago

    That could be true, Arden, but some of those postings I went and read them are pretty mean and cruel. You could forgive them if they ask for forgiveness and say they said them out of hurt or pain, rather than going into attack mode like some of them did. I’ve been on the receiving side of being attacked and know all to well what it’s like being bullied and put down. It’s hard to forgive when the other person does not see what they did wrong nor do they admit what they did was wrong nor taken out of context. I don’t want to put people down, but no one has the right to put Migraine Girl down in such a harsh, cruel manner either. I have read a lot of her posts and she’s never been mean, cruel, hateful nor disrespectful-she should be given the same courtesy. Migraine Girl has a lot of heart and soul. Maybe the others do as well. In the future maybe they should think longer and mull it over before they respond and in a more thoughful manner. It’s a two-way street. Everyone should lift eachother up. Period. And on Migraine Girls last posting that was not happening. I was coming to her defense and those others that posted should really be thinking about what they said and think again before they post again. And for the phrase “Go get’em” meant for her to keep on posting with her head up high and to let it all roll off her back like water rolls off the back of a duck. So, that being said……………..

  • arden
    7 years ago

    Them’s fighting words, Julie. Dont you think it would help the healing we all need in our community to forgive those who have offended. To accuse someone of having no heart or soul if they are not embarrassed is rather rough. As well as advising Migraine Girl to consider the source of mean comments we should consider the the state of the person who made them and the sorrow we can not see hidden in their heart. Nobody really wants to be mean, they are expressing their awful hurt and inability to reach a higher plane of existence.Let’s lift them, not fight them.

  • CG
    7 years ago

    Please continue to write openly and honestly about all the issues you face on a daily basis. Your writing is a gift to the migraine community, which helps us all cope and keep going. My daughter also has daily chronic headache with migraine, as well as significant mental health issues, and I find myself praying to say and do the right things in terms of offering support, love, etc. With adult children, there is also the worry of enabling or making things too easy…another topic entirely.
    Also, there is a difference between what I think and what I say. I try to be selective in what I say to her and when. We don’t live together either so that makes a difference. Thanks for the help you provide us. Keep on, keep on!

  • janenez
    7 years ago

    You are not alone, your fans hurt for you too. For all of our sakes, please don’t allow a few problem posts to hold your writing hostage. Take the time you need to re-group, we understand. But, we need to hear what you have to share. Your honesty is doing us all a great service. We appreciate your courage.

  • Etta Johnson
    7 years ago

    Some of the things people said in response to your previous blog were just unconsciounable!! You were being honest nd open about the feelings you experience. Anyone who has ever been in the position to care for others,IMO would probably relate to this at times. I think it’s human nature. I have he migraine for over 25 years now and for nearly half of that time I worked as a caregiver in hospital and emergency room settings. It is very difficult to see people in pain especially when you know so well what that is like. It’s even more difficult when it’s a loved one. I think some of your shortness or lack of empathy is more with the whole migraine situation rather than specifically at him when he’s experiencing one and going through the pain and disability. Another thing that I personally experience is that when my husband gets one of his really rough tension type headaches I tend to try to do the things for him that I find helpful to me when I am having the head pain etc. Thats not always compatible with what HE wants done for him or what he will allow me to do for him. I find myself thinking something along the lines of, “Well if you would only do this thing that I think you should do you would feel so much better.” And really, I don’t KNOW that to be a fact! That’s just my opinion and may or may not be correct. But I think it’s at least partially linked to being there and watching my beloved husband who is so good to me when I need him being in such pain himself and feelin helpless to do anything about that and just wishing I could make his pain go away.
    I read your blogs all the time and I enjoy your viewpoint. Many times it brings out something I have never really put a lot of thought to being true or more often than not I find myself thinking something like that’s what I have always thought too!! Please keep writing in that open and honest way that you do! Don’t let people who don’t know specifically what you are talking about pour out their negativity onto you! I know you can’t help but feel hurt by their comments but don’t dwell on that, there are many of us who understand what you are saying and understand that you weren’t proud of what you were feeling but nonetheless it was what you were feeling and want to work on being better. Again I say keep up the good work! I love to read what you write!

  • sherylmeyer
    7 years ago

    I didn’t read the hateful comments either. Sometimes I disagree with some of the blog comments by others, but maybe it’s because I can only understand how migraines affect me. Maybe part of problem with people is because when you have had migraine for years, it’s just plain hard not to be cranky a lot. That’s when you might say things because you’re in pain yourself and you’re looking for an outlet. I remember being young and not wanting to be around older or sick people because that seemed to be all they talked about. I have to remind myself of that, but it’s usually remembered after I’ve already been complaining. I’ve now become that person. Maybe that’s why I try to keep busy so I won’t be complaining about something when I don’t feel good. I guess the best part about this site is I haven’t seen anyone advertising a dating website over and over again. I’ve had bad headaches for over 40 years. The only thing I know for sure is no one can really do anything about it in spite of the thousands and thousands – who knows – dollars over the years. I’m sure we each handle it the best we can.

  • 7 years ago

    I didn’t read the hateful comments, but some people really just have nothing better to do than to troll others and spout hate. They need to get a life. Try not to sweat it too much. They don’t really KNOW you and KNOW your life, or what you or your man are going through. Just chalk it up to internet garbage and keep doing what you are doing. A lot of people really appreciate it. 🙂

  • Beth
    7 years ago

    After reading all those hateful comments, I can totally understand that you feel pretty raw. I admire you for putting this current post out there; it’s a brave thing to do. Keep going, Migraine Girl. There are a lot of us out here who follow your blog because it resonates with us. Yes, those comments were hurtful and mean, and it’s hard to ignore them, but don’t let those people stifle you or your words. Having chronic migraine disease takes enough away from you. Fight against having anything more taken away.

  • annefink
    7 years ago

    While everyone is entitled to their opinion, I thought many people from the last post were way off the mark!!! They probably don’t live with someone who also has chronic illness. My husband has his own set of stuff going on. Not migraine, but other stuff. You hit the nail on the head with your last post. Please don’t let the nay-sayers stifle your wonderful narrative of life with chronic migraine. I’ve been following you for years and have always considered you to be me with talent to write. You’ve so many times put into words what I’ve wished I could articulate. You are wonderful! Please keep sharing your story and giving those of us who aren’t as articulate the words to express what we go through on a daily basis! I adore you and all your posts! Thanks!
    Anne 🙂

  • deborahwheeler
    7 years ago

    Thank you for having the courage to share. There will always be people who just do not get it! I have been married for 32 years and for 22 of those years my husband has suffered from chronic migraine. Do I love him. You bet! Would I consider leaving him? No way–we are married “in sickness and in health”. We have a wonderful life in spite of his illness.

  • 7 years ago

    This post shows a lot of courage and willingness to continue to share your innermost thoughts and fears with us. All I can say is thanks Migraine Girl for giving this community another chance. I hope we can live up to your brave example.

  • lisewannemacher
    7 years ago

    I whole heartily agree with what you say. And shame on anyone who questions your intentions. Anyone who suggest that your husband leave you is pureley being hateful. And when your sick, we cant surround ourselves with hateful people.So to them Pffft, get a live and quit being ugly. That being said. I have chronic migrains as do my 20 year old son, my 30 year old daughter and my 8 year old grandaughter. I sympathize with anyone who has this condition. Thank you for what you do. I beleive that you are doing this because you are a careing person and you doing this is infact a God send for people to get some ideas on how it really affects us and what they can do. Thank You, And don’t ever stop….

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