Social Graces

Social Graces

Frequent cancellations due to migraine kept me from making plans with friends and family for a long time. Finally I felt comfortable telling loved ones that when I make plans there’s always a risk I won’t be able to follow through. I am so fortunate to have a wide group of understanding and accommodating people in my life.

But there’s an annoying flip side to the arrangement. Because I ask others to be flexible for me, they expect the same from me all the time and for whatever reason. Running late or canceling occasionally is totally understandable, even for healthy people. Life gets exhausting and overwhelming for everyone at times. But regularly making plans and not following through, running an hour or two late, or not showing up at all is downright rude. This behavior is ill-mannered in any context, but the fact that it apparently stems from my request for leniency is infuriating.

You might assume that these aren’t good friends or kind people to begin with. That’s not true, we are close and they are loving, caring and altruistic. So I’m filled with questions: Does my being at home most of the time signal to people that my schedule and time aren’t important? Has my inability to nurture my relationships due to chronic migraine’s demands on my attention diminished my friendships? Do I pretend so well that I’m doing OK that everyone thinks I am? Do they think migraine isn’t a very big deal, so that they equate cancelling because of an attack to canceling because of a bad day at work?

I’m at a complete loss for how to deal with this. I do understand that pressing things come up that have nothing to do with migraine and that everyone encounters major issues that sometimes interfere with plans. I don’t mind being flexible for my friends, but I hate the feeling of being taken advantage of. Am I overreacting to something that’s not about me or do I have a legitimate issue to bring up with my friends? If so, how do I do it? I’d appreciate any perspective you can provide.

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Comments

View Comments (22)
  • Luna
    5 years ago

    “But regularly making plans and not following through,”
    This is not what friends do! Talk to them.

    I am extremely sensitive to odors of many/most kinds. Used to be able to handle odors better. I no longer make social plans that are not a group setting. That way it is not a problem if I am not able to be there. Even some group settings are in an environment that I would not even consider going to.

    I am more of a recluse. Especally since the odors make my brain not function and trying to have a meaningful conversation is difficult. Things come out wrong and I end up offending people. They don’t understand because after all I look like there is nothing wrong with me. What really makes me laugh is someone saying to me, “I don’t wear perfume”. My answer is “But your laundry detergent does”.

    Anyway, being a recluse can get lonely but the alternative just takes too much out of me. Am getting to old for that. I realized some time back that I don’t have any real friends but I do have one excellent neighbor.

  • Jan Piller
    5 years ago

    “Do I pretend so well that I’m doing OK that everyone thinks I am? Do they think migraine isn’t a very big deal, so that they equate cancelling because of an attack to canceling because of a bad day at work?” That part of your post stood out for me. In answer to it…. Yes!! They DO think you just had a bad day at work. And their behavior/judgments are insensitive, ignorant, cruel, unsympathetic and callous. I for one am sick and tired (literally) of making excuses for them. “Oh, I don’t want them to worry about me so I won’t whine” or ” they must hate that I always blow them off for an engagement”. I can’t believe the situations we put ourselves in sometimes for the sake of our friends and family. If they’re as caring and altruistic as you believe then why don’t we hear more of “Please don’t worry if you’re late – I totally get it!! or how about “Before you make a committment, please know, I appreciate your situation and don’t want you to worry if you can’t make it”, or how about “Hey – please come and don’t worry if you fall ill with a migraine, I’ve got a quiet, dark room all ready in case you need to use it”. How come we don’t ever hear comments like that??? I wish for once that migraineurs would stop blaming themselves and start blaming the uncaring and unsympathetic callous people we call our “loved ones”. Stop making excuses for them, stop blaming yourself and call a spade a spade.Okay – that’s my rant.

  • Sylvania100
    5 years ago

    This article is so right on… I’ve known my closest friends since before I got migraines. When I was first experiencing them, I cancelled a lot. One friend in particular feels like it gives her license to change plans at the last moment (you did so I can). Even though she is a really nice person, she just doesn’t seem to value my time. I don’t like to talk about the migraines. I think she has seen how they have ruined my life. On one hand I am sorry that I haven’t been a very good friend, on the other hand I feel like I need for her to value me, because I’ve done the best I can.

  • Michelle
    5 years ago

    I’m so very thankful for reading this tonight. It has definitely hit home with how I have been feeling lately. Especially with one certain friend. It hurts none the less because they became your friend for a reason.

    Oh and I appreciated reading all the other comments as well. I was needing to find my backbone again and those words of encouragement really helped. I pray for the best for all of us.

  • ithurts99
    5 years ago

    I’m not sure if this is really an age issue or not but I’ve had migraine my entire life. There were times when I sought counseling to resolve these issues ( or try to) and other times when I just motored on. Now at age 58 having been on disability (Meniere’s) for 15 years and my mother having passed away five years ago (we were very close) AND my headaches having taken a real turn for the worst- I find that I am just okay with getting a few things accomplished each day. I gave up all my friends over a year ago as I have a naturally generous nature
    and I got tired of being taken advantage of ( I think many people were jealous that I was not working a real job) and even though I asked my large family repeatedly and nicely to at least ask/invite me to family occasions knowing I would not – actually could not – come, they have never extended me that courtesy. I would like to take the opportunity to thank Kerrie Smyres and the Excedrin website as I feel there is still a very real stigma attached to Migraine especially in less urban areas. Thank you.

  • MigrainesAlwaysHaveOne
    5 years ago

    I have lost friends due to canceling from migraines too and it really hurts that they just don’t understand. I also am in a similar situation to you as I am 51 and not working either although I want to, but so far I am just too ill. I am trying to reduce my bedbound days, but having limited success. My family is not really supportive either and the one time I missed Christmas really pissed them off. I just don’t get why they don’t understand. I guess because migraine is so invisible to others, not like a ripped off limb or something, idk. I agree – there is def a stigma with migraine. I’d like to give one to everyone in the US to experience for just one full day and have them complete their usual tasks with one. Then have a conversation with me when I am on day 4 of a nice little migraine ride!

  • ithurts99
    5 years ago

    I would like to add that I no longer apologize for having a migraine at any time and am very clear if I am having one (especially at a doctor visit – dentists in particular) and will only apologize if any inconvenience was caused by something other than a headache. I also have arrangements with my doctors that if I have to cancel an appointment at short notice due to migraine I will not be charged.

  • AmandaTaylor
    5 years ago

    For the past 12 years I have been unable to hold down a full time job outside the home due to my migraines. I also have to constantly cancel on friends or appts and it just tears me up to do so. I’m a person that likes to stick to my word so when I have to break that work it really upsets me.

  • Leslie Coutsouridis
    5 years ago

    Dear Amanda, Having migraines for 40 years now, often 24/7, My lifestyle has adapted through the years. My social life is very limited. I am fortunate to direct music for a church
    near my house which is the only place I will drive to. Except for certain times, the preparation for this job is on my own time, which I get done at home, when and if I’m feeling ok. Everyone there knows about my chronic pain, are understanding ,and many have become good friends. This job saves me from the boredom, and of feeling worthless.
    Perhaps you could find a volunteer opportunity…there are so many. Perhaps you could go to visit people at a nursing home or help the rec director, and let them know that you will only come if you are well. You could develop relationships with lovely people and feel very appreciated, believe me!
    I otherwise live like a hermit, but saver my phone calls with friends, especially friends who share painful conditions, and family, (while knowing how to cut the calls short). I enjoy my obsession with house plants and outside container gardening, and using the internet although it’s not good for me. Stay away from people who don’t understand, Amanda.I took charge to change my lifestyle so that my health and happiness came first. Feel better sweetheart, Leslie

  • minddoctor
    5 years ago

    Hello Kerrie, I’m so glad that you brought up this topic for discussion as I’m sure that most of us with chronic migraines have struggled with this very issue. Like yourself, I have adopted a social strategy that I call “spontaneous living”… it feels less pathological that way. Given that I have no idea if I’m going to have a headache or not this weekend, I have made a tentative plan to ocean swim with my friends. We’ll check in on Saturday and Sunday mornings and see where things are at. It generally works well, but like you, I have had some episodes where close friends have cancelled on me for reasons that can leave me feeling less than special, or sometimes, there’s a complete lack of explanation or a fail to call or reschedule. When this happens, I generally explain to people that chronic migraine is an incredibly socially isolating experience, and when I get lucky enough to have a headache free day only to have plans dropped without reason, it feels hurtful. I find that it doesn’t hurt when people call or text and explain why they can’t make it (after all life is hectic for most of us, even without chronic pain), especially when a reschedule is offered… I think for me the social isolation is easier to take when I know there is another plan on the horizon. I have found that most friends react well to this feedback. The ones that don’t, well, they have phased out of my life, and I’m OK with that. When you have limited healthy time, why waste it on people who make you feel bad? I like to put my energy into relationships that give to me as much as I give to them.

  • vanessafarias
    5 years ago

    I think that people who don’t suffer from migraine just don’t get it. Similar to people not understanding alcoholism. It is not for you to worry. If they’re rude or not, it is no matter. You know you’re ill when you can’t make it. That’s all you can control. I get the same thing from EVERYONE, whether friends or loving family or whatever. If you don’t got it, you don’t get it!

  • Janet
    5 years ago

    You said it in a nutshell….if you don’t got it..you don’t get it. Sadly, the end. It is hurtful all the same.
    Blessings,
    Janet

  • callmemissm
    5 years ago

    I don’t think it’s unfair to raise the issue, and at core, I don’t think you’re over-reacting. Being punctual is a common courtesy that doesn’t go out the window just because the other person has a medical problem that forces them to change plans. But, what’s happening is basic human nature, and it won’t change unless you (gently) put it back on track.

    If you have a friend that is more understanding than the others, that seems to get it a little more, bring it up with them and see what they say.
    If I had to hazard a guess? A little bit of this is to be expected when you have to cancel a lot, but when it starts being a constant issue, it’s time to bring it up. It may just be that they aren’t seeing the plans as solid because they know they aren’t on your end. Conditioned behavior. They don’t understand how much you value the time you are able to spend with them. It’s not that they mean to disregard you; it’s subconscious. They might be shocked to find out how much it bothers you.
    If you approach the subject gently and put it in terms of how much the time you spend together means to you, you might find people very receptive and apologetic.

  • shine4him
    5 years ago

    I agree! I would also add that HOW you approach the topic is key.

    Like MissM said, emphasize how much they mean to you. Create a “safe place” first. Then, gently bring up the topic. I usually would start by asking open-ended questions, rather than saying any “You did this…” statements. That way they won’t feel put on the defensive.

    You might mention how it makes you feel, but then focus on how the two of you – together – might solve the problem. Try to attack the problem as a team, not just go you vs. your friend. Hopefully that helps!

  • Val Frost and Bubbles
    5 years ago

    OK gals – after 51 years of it, I reached a brilliant conclusion: either CMD has you, or YOU have CMD. I watched my mother succumb to it each and every time it hit. Once I started with it at age 12, and found the pain to be insufferable, I made a concerted effort, stubborn if you will, to try to “live my life around the migraine disease”. “Flexibility” became my operative word. I would take the meds with my cup of tea and simply “carry on”. Over time, this succeeded in allowing me to build up a pain tolerance level such that I could and would succeed. On the severe days, yes, I would book off sick, but most often I would literally “focus out the pain by distraction” (i.e. concentrating on something else altogether). This was akin to inflicting “tough love” on yourself, but to try to explain the various auras, causes, triggers and the different levels of pain, the variety of places that it would strike me, was a conversation only best had with my doctor, who also, at that time, was not too intuned with CMD. If people have never suffered from this disease, we can in no way expect them to fully “appreciate” the living hell that it inflicts upon us. Therefore, with that said and done, I chose to live MY life, and try to fit friends and relatives in, between the attacks. The added stress of trying to commit to attend here and there in order to appease the multitude became so stressful that it actually exacerbated the pain level and the attack frequency that I was already dealing with on my own. CMD is a disease, and not always just a headache. Many say that they understand but unless and until they have ‘walked in my shoes’, I do not expect them to honestly understand. Live your life as best you can, and if they really love and care for you, they will surely follow. With CMD, there is no reciprocation of caring. One is in constant daily pain and the other is not. It’s black or it’s white. There is no “grey area” unless your friends, relatives, partners, bosses, fellow workers or your children suffer from the same disease. They mean well in saying that they care, and they DO care, but they do NOT really understand the torment and the “battle fatigue” that this chronic condition causes. Only YOU genuinely appreciate what YOU go through. And some attacks are just so severe, that they are totally inexplicable. I hope this helps all of you realize that basically speaking, we are each on our own out there, and we must try to build up our pain tolerance level in order to be able to survive it. It’s jungle normally. With CMD, it’s a ‘war zone’. God bless and have a pain-free day. Val and Bubbles, my Newfoundland Service Dog

  • Glory
    5 years ago

    Val,
    You exactly reflect my personal reaction to my migraines. (But, at 58, I have even more practice!).

    Pretty much, my choices (especially early on) were medications I could not tolerate, becoming an invalid, or learning how to navigate the choppy waters of life with migraine, hoard my supply of Fierinol with codine, and console myself there was a stat order at the local ER for the absolutely unbearable times.

    My husband at the time was a selfish jerk (rule out ER visits since I required a driver), I was the only reliable wage earner, and I had a son who needed me. There was literally no one to cover my caseload at work. So, I rapidly learned how to work through days glazed with pain and coping by doing such ridiculous things like blindfolding one eye so the auras didn’t prevent me from driving. There was no other choice. I learned not to make definite plans with my close friends, but it still hurt when another was the matron of honor at one of my best friends wedding. (She was absolutely right, we had discussed the situation etc etc etc, but once the reality struck…. Oh my)

    These days, I have both a husband and son blindsided by issues complicated by chronic migraine, and I have watched both family members and friends write them out of their lives because they are unable to make a firm commitment to anything. Dealing with this horrible disease on a daily basis is something most people cannot understand, and they will eventually decided the migraine befuddled person just doesn’t care or is a complete egotist.

  • Janet
    5 years ago

    Val…you said what I could never put on paper!!! Thank you…you are 100% correct.
    we are an island onto ourselves. God Bless you for saying what I think all the time …and you and all of us with CMD …I pray for relief and a cure …someday.
    Blessings
    Janet

  • Katie Smith
    5 years ago

    Oh, wow! This subject hits home with me. Most of my friends and even several family members seem to have written me off. It hurts. A lot. So, I think you’re very blessed to have such close and understanding relationships. While it may seem like a personal attack to cancel plans with you, it’s just as likely they really needed that time and space to deal with their life’s difficulties. I do think you may be right about the perception of our situation. We’re at home most of the time and, as my hubby has often laughed – I deserve an Emmy at times. Not only is our pain invisible. We then try to hide it. I do it in an effort to ‘protect’ the other person from ‘feeling bad for me’. In the end, maybe we shoot ourselves in the foot, so to speak – by making our pain seem less than it is. I’m so sorry that you have migraines and I completely understand the isolation. I live it on a daily basis. I think that being in this situation gives me way too much time on my hands and as a result, way too many things grow and build in my heart and head. Usually, just voicing it to my sweet hubby is enough and he’s honest in telling me when I’m making a big deal out of nothing. A friend once gave me some sage advice when raising teenagers…choose your battles wisely. It has served me well in general, so I hope it helps you. Kerrie on….!!! 🙂

  • Dori Fritzinger
    5 years ago

    I understand the pain – I have lost “good” friends to them being not able to deal with my “headaches”. I wouldn’t wish anyone to have to deal with repeat migraines but it hurts to know that someone you trusted turns their backs.

  • Amber Wertz
    5 years ago

    Hi Kerrie,
    I have several close friends and family members who have chronic migraine in addition to my own migraine disease, so “changing plans on the fly” is pretty regular for all of us.

    I think what you said is pretty perceptive: Life gets exhausting and overwhelming for everyone at times. Keep repeating those words to yourself. When someone cancels plans, it’s usually because something is going on in HER life, and it has nothing to do with you. Give your friends and family the same loving empathy they give you and wait to get together at a time when you’re all feeling 100%. It might be a few weeks later, but you will all appreciate the time so much more.

  • dmae
    5 years ago

    Hi Kerrie,
    Even though it is the fault of our disease, it is not fair to keep people on standby. We make and cancel plans, but to those on the receiving end, it is just rejection. They do not dare say anything without sounding callous, so they subconsciously take it out through tardiness and no-shows. Toxic all-around.
    I go on long extended breaks from even trying to be social.
    Next time, I think I’ll try for a safe destination, like a museum, library, or park, and a window of time where I invite friends to just show up. It should be a place where it’s okay to be alone or with others. If I make it, fine, and if I don’t, maybe next time. That way the expectations are lower. Every thing is a bonus instead of a loss. I hope that helps.

  • Janet
    5 years ago

    I disagree with what you say…sorry.
    Blessings,
    Janet

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