I’ve been fortunate to receive very little negative feedback on this blog. Yesterday was one of the rare days that another migraineur left a rude comment. In response to the post Showing Others What a Migraine Attack is Really Like, Lynda wrote:
I think you should worry that you are clinging to your migraine to define you and that you wouldn’t know who you were if the pain went away, so it is helping you by not going away. I am a chronic migraneur as well, every week, I lose a night of sleep at least and two days to a horrible headache, but I have managed them for 2o years of work and supporting a family and myself. yes there are days I must come home. but oddly my headaches wait til friday night to take me down so I can perform my tasks. I question your will when I read your attitude. You are lucky to have your husband or you would die, or wake up.
There are so many possible responses to this. I can hear the universal mom’s voice telling me to ignore the meanie and not share her comment with you at all. That Lynda is just jealous and I’m giving her more attention than she deserves. Buddhist psychology would say she is lashing out from her own pain or fear and that her words have nothing to do with me. There’s the snide part of me pointing out that losing two days a week to migraine does not meet the clinical definition of chronic migraine, which is 15 or more migraine days a month15 headache days a month, at least eight of which are migraine. The martyr also rears her head — “I’m sorry you’re suffering so much. I hope lashing out at me has brought you some relief.”
Underneath all these possible responses swirling in my mind is the most puzzling part to me. Why? Why does one migraineur feel the need to judge another’s experience? Why do so many migraineurs assume that their migraine attacks are representative of everyone else’s?
Migraineurs and their migraine attacks are all so different. The definition of chronic migraine encompasses a vast range of pain levels and numerous possible symptoms. There are people who have 15 migraine attacks come on each month, but are able to abort them with triptans before the pain even begins. Then there are people who have level 8 or higher pain every single day. That’s right, one chronic migraineur can experience no pain at all while another has daily pain on par with childbirth, according to this excellent comparative pain scale from TIPNA.
As confused as I am about why people are so mean to each other, I also feel the sting personally. I write this blog to help myself cope with and comprehend daily headaches and nearly daily migraine attacks in the hope that I can help others who face similar challenges. I share my most vulnerable thoughts and describe moments I would rather no one ever know. Only in the last year have I opened up completely, sharing what my days are really like and that the emotional cost of migraine is so high that I have considered suicide. A weak person would not open up in the way I have, though it has taken more than a decade for me to comprehend how strong I truly am. Yet I still fall prey to the internal voices that question the severity and validity of my illness. External voices are not welcome in the choir.
The havoc that migraine has wreaked on my life and my identity is immeasurable. I have accepted migraine as part of who I am, but the only way it defines me is in the tremendous resolve I employ to keep it from overtaking me. In no way do I cling to this illness for my sense of self. Instead, the opposite is true as the illness attempts to suffocate my personality. The moments in which migraine is not at the forefront are blissful. I had a few good hours last night, dancing and baking and laughing. My identity shines when I am not in the throes of migraine.
Just as I have not let a lifetime of migraine dominate my sense of self, I will not allow one person’s meanness bring me down. Thanks for the armchair psychological assessment, Lynda, but you are completely wrong. Well, not completely — I am incredibly lucky to have an emotionally supportive husband who is able to support both of us financially. It is quite a stretch since he lost his job last year and is starting his own business, but we are making do for now. Without him, I would be living with my mom and spending all of my low-migraine-pain time trying to earn money. Now I just spend most of my low-migraine-pain time trying to earn money; in the rest I can dance and bake and laugh. For this I am immensely grateful.
Plenty of weeks go by when I am too sick to even laugh, but the small bits of time I allow myself to do what I love keep me from withering away in bitterness and resentment. I hope you the same for you, Lynda, and for every reader of this blog. Seeking joy wherever you can find it is imperative in a life with migraine. Without it, misery becomes the disease.
Thank you for this blog. I would urge you to cover a point that I haven’t seen, and which I experience, so I’m hoping others do, too. That is, when I have a headache, I want to lie down, throw up, or pass out. But, I keep going in a kind of slow-motion type of movement, which must mimic a drug-induced haze because my husband and mother-in-law both comment, every time, “how much medicine did you take? You didn’t overdose, did you? You’d better cut back.” Whether I took a single pill or two pills every 4-6 hours, the headache remains, and I try to keep going the best I can, but it’s discouraging to have them blame the low-action to pills rather than acknowledge the debilitating effect of the headache. Other times, as we gather together, my mother-in-law will comment, “You look sad today” when she knows I have a headache–then, after I tell her I have a headache, a little while later, she’ll comment, “I don’t know why people can’t just be cheerful around others instead of being so depressed all the time.” The ONLY time my family acknowledges I MAY need to lie down with a headache is when I actually vomit; then, after a few hours of lying down, they let me know they believe I’m just drawing out the drama to get attention. There is nothing I can do so they acknowledge that the pain from a headache can actually cause one to adjust daily activities to accommodate the pain threshold. I hope someone else, such as yourself, has some wise words on what to say to effectively let people know their unwillingness to acknowledge all the ways pain can affect one’s activity and mood.
VickyKae, I’m so sorry you’re having difficulty with your family understanding what you’re going through. It’s a problem many of us face. It may be helpful to be clear that you don’t just have a headache, but are having a migraine attack, which is a neurological disorder with symptoms that can be felt throughout the body. The slowness is one of the many symptoms of migraine (here are some of the other symptoms that many people are unaware of: http://www.thedailyheadache.com/2006/12/the_many_sympto.html).
Sharing articles that you find particularly helpful may also help people realize that what you’re experiencing is more than a headache. Migraine.com, which I also write for, is a great site for these types of articles.
And, if you find a doctor who really understands what you’re going through and supports you, try taking your husband to an appointment with you. Hearing directly from your doctor that your symptoms are real and (likely) unrelated to the medication you took should help your husband better understand what you’re going through. And if the medications are the cause of your slowness, you might want ask your doctor about different types of medications with fewer side effects.
Take care,
Kerrie
As you can probably tell from my comments on way old posts today, I am not a regular reader. But I do consider your blog to be an important resource. When I do go on my internet migraine journeys I always stop here. It’s the combination of personal journey and science based information. I always find something new to consider, I may or may not agree, want to try it, etc, but you always give me new things to think about.
Lynda’s comment was certainly rude and snarky, but I think for many migraineurs, there is a lot of anger, and unfortunately she directed it at you. Her comment does raise an interesting question for me, however. I spend a lot of time hiding in my darkened room, removing myself from three of the major migrane triggers in my life…my 3 kids. I will be on the edge of a migraine, and it means either hiding alone in my room in semi pain, or going out, interacting with them, and falling into severe pain after about 30 mins. Sometimes I do feel like Iam hiding from life, as Lynda says. But I also know I’m trying to avoid descent ito more pain….it’s a difficult balance.
I’m a bit of lurker, but this blog was really an anchor for me last year when my level of suffering was, in general, even greater than it is this year. I felt like someone understood (I have migraines and chronic daily headache and it helped to see someone suffering with not just one of these ailments, but both).
I’m really happy for Lynda if she is able to function at a fairly high rate with migraines. Sometimes, I’m like Lynda in that I can push myself. Then other times I can barely get out of bed. No one should feel bad about how they deal with their own pain as long as they aren’t harming others.
Hi Kerrie!
That comment angered me. You addressed it kindly, and I do think her attacks are quite different from yours or even mine.
I enjoyed the relaxation sites you referred me to earlier this summer. I must say right now I’m having guy issues. Like you, I cherish my pain free days. These past few months on my good days a migraine is triggered by my boyfriend. When I’m in an attack or in the post-migraine blur he will not do housework. But most of all he does not have a job so we have been without income for a month. I also do not have parents and his do not help us much. So this has caused me great stress and I’ve been way worse. As you know stress can trigger a migraine and what could have been a low-pain day becomes bad. Even when I can barely walk I cook him 3 meals a day and do basic cleaning while he lays around and tells me he is too traumatized by past instances in his life to do anything at all. I am now thinking..well, I have a chronic illness, therefore I need a warrior to at least go to work and do some basic day to day tasks.
I am thinking about escorting or providing sensual massage because I still have my looks and it’s something I can do from home. It’s taboo but I’m sure many struggling women have had that thought. I told my boyfriend and he of course was horrified. If he was my warrior I wouldn’t think of it. He also thinks he’s too good for fast food restaurants.
I’ve told him that I’m sick and he’s well so he needs to go find a job as well as help me with housework but he will not. (we have been getting by with work on the internet but it’s getting harder and he’s lazy so won’t put in the added effort). On my good days I also do his school work so that he’ll make good grades and get his business degree will have a professional job in 3 years..
All this is dragging me down and making my condition worse, what should I do Kerrie? I’m just telling you my problem cause you know what it’s like not being able to even maintain a house. This ‘comment’ was long 🙂 you can just reply when there’s nothing better to do, hah.
Kelly
I always enjoy reading your posts as I suffer with chronic migraine as well. At times, when you go long stretches without posting, I wonder how bad the pain has gotten and keep you in my thoughts and prayers. I was disheartened by the complete lack of empathy from the comment but I too have been kicked while I was down, so to speak. Perhaps she is only lashing out because she’s projecting bits of herself onto to you. Who knows, and frankly, who cares. May you find healing and strength. May you be ever reinvigorated. May you enjoy those hours,however few, where the pain is tolerable.
Thank you all for your kind, supportive comments. My mom, too, appreciates how much you support me! It is heartening to hear stories of people who have been helped by this blog.
Thanks also for the great things to think about. I’ve already got three more posts brewing based on comments you all have made.
Thanks again for all your love!
Kerrie
Kerrie, I really appreciate your blog and how you pour yourself into each post. I do not suffer from migraines but my wife does. I stumbled across your blog a few months ago and it was one of the first times that I realized that my wife is not the only one out there and that we are not crazy.
Also hearing how your husband supports you and helps you has made me realize how important it is to support your spouse through this. It really does make the good days that much better.
Wow! Wow! Wow!
That is one absolutely amazing, courageous and beautiful reply.
I’m truly inspired by that, and somehow now feel less alone in my battles with migraine and the misery that can, at times, surround it.
Well done and sincerest thanks.
All the best from Melbourne, Australia
You know, I really try to rise above, taking the high road whenever I can. But in this case, I’m not going to. I am going to address this mean-spirited commenter, mimicking her sentence stems, because I’d like her to see how her communication style reads to others.
Lynda, do you know what I think YOU should worry about? Something, anything, from your OWN life, because that is the entire domain of your expertise. Without being in someone else’s head, heart, and body, you cannot possibly know their struggles. Stick to your own.
I am a friend of Kerrie’s, and a regular reader of The Daily Headache since the beginning – which I believe is a decade ago now, or longer. If you honestly believe that Kerrie is clinging to her migraine for self-definition, then you haven’t read much of this amazing chronicle, which has undoubtedly helped countless people who would give anything for an identity that could entirely exclude their chronic pain.
Yes, you are entitled to your spiteful, judgmental opinions, however misguided they may be. But not without words from people who stand in Kerrie’s corner.
I question your integrity when I read your comment. And I hope you know that there is your room for your pain. By sharing invaluable medical information and emotional support to her readers, Kerrie is not taking anything from you. You can live your life exactly the way you want to. Kerrie is not threatening you. You don’t have to be cruel.
You are lucky you didn’t make that comment to Kerrie’s face, in front of me or any of the multitude who love her and champion her, as she tries to make sense of, and heal from, her debilitating condition.
How fortunate for you that you’ve been well enough to work and support your family for twenty years. One would think you would be grateful, and would not parade your capacity in front of someone who so openly wishes to take a fuller part in her life than she is currently able.
If you are reading this, Lynda, please know that it’s not too late to apologize to Kerrie, and to those whom she inspires, for your vicious words re-posted above.
Kerrie this is beautiful and I miss you. Letting go of “why” (and I’m not saying that’s something I recommend for everyone, or even anyone, just that seems to help me,) is something I continue to work on. Trying to understand other people’s mean-spiritedness usually messes unpleasantly with my head and ends up making me feel worse. I try to just know and make peace with my inability to understand it. It still stings, but I think it stings less because I think about it less.
Thank you all for your loving, positive support.
Signed, Kerrie’s Mom
First, Lynda is just an internet troll with no life. She would never post that comment with her real name and email!
I have sortof similar symptoms to her (if she even has migraines like someone commented). I’ve always viewed it that a routine really helps me and I get migraines on the weekend because extra sleep, late breakfast, etc. I’m also helped by taking a shower and going outside, the exact opposite of you. I can’t say I’ve ever thought to invalidate your migraines because your symptoms are different…anyone who reads your blog knows that you are one tough cookie!
Anyway, I’ve been reading your blog for about a year and this is my first comment. Your blog really helps me to put things in perspective. Its also helped me in a lot of tangible ways! I take magnesium now because of you and am controlling my migraines better because of some of the links and resources you’ve posted.
Thank you!
Kerrie even though this came from a mean-spirited comment, this is one of my favorite posts of yours. Thank you for sharing. I was wondering if I can make a poster with a quote from this post and link to it on my artists against migraine sight? I think what Lynda says is something we often here and your answer to it applies to us all. I think also the pain levels distinction is important. I oscillate between the 2 examples. I have days, sometimes a full week, or being able to abort attacks from the start and feel little to no pain and appear fine to the world. Then I’ll have the times when the abortives don’t help and this can also be days on end. I think people don’t realize that chronic means it really affects you more days than not, even if some of those days are pain-free. You are still avoiding triggers and changing much about your life to try to be well, not to mention being dependent on a drug. I also really love the image of your baking and laughing and I agree with Virginia that sharing that might also be a great way to show an aspect of a chronic migraineurs life. We, like everyone else, can bake and laugh and having loving relationships, and earn money, and have dreams and hopes and goals. Show us your loves and goals so we will not be scared to have our own. Much love to you! -Lisa Benson, Artists Against Migraines
I’ll bet the person behind this Lynda persona doesn’t have migraine. I say that because I’ve never met another migraineur who was condemning of me for the attacks. It always comes from people who don’t have migraine themselves.
I’m proud of you, Kerrie. And I love all of us.
Lynda, have you ever asked yourself why you don’t have the will to do away with your head issues altogether? If you can schedule your attacks to Friday nights, you can dispense with them altogether. :p
Kerrie, that comment is all about her and her insecurities. You are amazing. The judgment does hurt and it’s hard not to let it get under your skin. I’m thankful there are so many wonderful migraineurs who support each other and help us hold ourselves up when we struggle. That makes it a little easier to let those kinds of ignorant, rude statements go.
Kerrie, you have been very fortunate, up until this instance, that your interactions with people on this blog have been so positive. There is an old saying, “do not judge a person until you have walked a mile in their moccasins.” None of us can know another’s pain. I am sorry Lynda wrote such a mean-spirited response. Blow it off and don’t give it any further credence.
One thing that does not appear in your blogs is mention of the many, many things you ARE accomplishing and I think that omission might lead readers astray.
For example providing input in the development and marketing of Theraspecs, nurturing your exceptional spouse, baking and sharing wonderful treats with friends, the love and support you give your friends and family, etc. and I think that omission might lead readers astray.
Love, Va
Kerrie, I would add that your identity shines through even when your pain level is high. I marvel at your ability to write helpful positive posts even during painful times.
I’m glad that you know and love yourself well enough to dismiss the harsh, negative and ultimately sad comment made by Lynda. Her comment says much more about her than it does about you.
I really enjoy your site and have learned much from your person journey through life with chronic migraine. But I wanted to point out a spot where you could clarify a definition in this post. A diagnosis of chronic migraine dies not actually require 15 migraine days in a month, but instead 15 days of tension of migraine headache, where at least 8 of those days are migraine days. Based on that definition, your commenter does appear to have chronic migraine. Obviously, her own experiences are different than yours. Just as mine are different than yours, and both of ours will differ than the next sufferer of chronic migraine.
Your post stands as a testament to what gets you through the bad times (good support from a loved one, etc.) and I really loved reading it.
Thank you for writing. Please keep it up! It’s really good to have your voice out there, helping us as migraineurs be more visible.
🙂