Constant Cancellations – the rare friend who can navigate chronic migraine

Constant Cancellations – the rare friend who can navigate chronic migraine

It’s a rare find: the friend who can handle all the idiosyncrasies that come with chronic migraine.  The requests to find a quiet restaurant, to choose the chair that faces away from a bright window or light, to avoid certain foods, and to put up with endless last minute cancellations can challenge and confuse even the most patient and kind person.  For the friend of a migraineur, becoming knowledgeable about the many triggers can feel like a job in itself, with sensitivity to light, sound, smells and foods lurking around every corner.  However, the friend that can show understanding without judging these needs is key.  So many people with migraine have felt severe judgement for this invisible condition that often gets downplayed as “just a headache.”  “You don’t look sick” is an unintentional hurtful statement we’ve all heard before.

This condition has tested many of my long-time friendships and caused me to lose several shorter-term friends. The impact of migraines on those surrounding the sufferer is immeasurable:  The worry, constant changing of plans, and sense of helplessness is both paralyzing and crazy-making.

The ability to receive chronic cancellations and not take them personally takes a confident person who truly believes and accepts the condition of daily migraine.  The pain often causes the sufferer to retreat into into a dark quiet space until the storm has passed- and can make communication impossible for windows of time.  By its very nature, migraine is isolating.

People new to me or the subject of chronic migraine are both eager to solve the challenge and confident they can.  It’s a natural tendency to want to help someone feel better and to assume someone can get better.  I have been asked many questions and offered seemingly endless ideas until it becomes clear to my new acquaintance that this is a mystery that can’t be solved and rather is a condition that needs to be accepted.  Some are not comfortable with this arrangement.  I can end up feeling judged for not trying hard enough to “get better” when truly after over 30 years of doing just that, I’ve learned that while I continue to look for solutions, my energies are better spent on my family and getting along in life rather than engaging in a battle that can’t ultimately be won.

So while it is clear that chronic migraine can wreak havoc on any relationship, it is equally clear that those who emerge as steadfast friends willing to brave the relentless and repeated storms are phenomenal examples of warmth and kindness, patience, nonjudgmental flexibility, and acceptance.

Here’s to the core group of friends and family who have weathered this storm right along with all of us.  Your humor, patience, and love has meant the world in helping us face this challenge day after day.

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 (21)
  • katdan1026
    3 years ago

    Thank you for posting such an understanding article. I had chronic migraine headaches thru my 20s and 30s. A break thru my early 40s, then we developed Migraine Associated Vertigo in my late 40s. I now have Acephalic migraines followed by episodes of true vertigo, nausea, vomiting, tinnis, loss of perception,confusion, falls. The episodes are frequent, episodic, unexpected. I have almost list my job, become debilitated at times, had to give up driving. And canceled so many plans at the last minute. And you do get tired of hearing “any progress yet”, like you’re not trying hard enough to get well. Thank you, I’m sorry to see you suffer too, but it makes me feel a little less alone to know I not the only one. You are living my story too.

  • Brooke H moderator
    3 years ago

    Hi Katdan1026 – Thank you for taking the time to share your story. I’m sorry that migraine has been impacting your work life and social life. It can be very challenging to ride the roller coaster that is chronic migraine. We’re glad that you could relate to this article and know you are not alone in this fight! Please feel free to post here and, if desired, also on our facebook page: https://www.facebook.com/MigraineDotCom/?fref=ts for support! We’re glad to have you as part of the community. Best, Brooke (Migraine.com team)

  • DebinIndiana
    3 years ago

    Excellent article, hits home, as so many do. I often wonder if it would be better to accept the migraines without everyone trying to find yet another fix for me. The well-meaning, but just as stressful conversation. I appreciate knowing others go through the same things! It helps!

  • Fiona
    3 years ago

    Thank you so much for this well written article. It is just what I needed to send to a friend who “gets it.” I wanted to say thank you in a way that shows her how special she is. Your article will do that. I’m very blessed indeed.

    I’ll also share it with a group of friends who are supportive as a means of thanking them. They still try to fix me and perhaps they will pick up on that they will have to accept they won’t be able to. Let’s all accept it. I’ll do what I can to deal with it in the best way possible while living as much of a normal life as possible.

  • mrst53
    3 years ago

    I thought my one BF understood my migraines until she wanted to make a bet with me that she would quit smoking (which will be hard for her, as her husband smokes) if I would get up, at 8AM every morning and stay up all day, no naps-which will be hard for me, considering all the medications I take that make me sleepy, plus she said I can’t lay down with a migraine. That really hurt. How could she not understand I needed to lie down with a migraine? We have been close friends for 6 years and now she completely takes me by surprise. Oh well, back to square one.

  • Hari Emani
    3 years ago

    Dear hollybee,

    I do not have migrane, but I deal with fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) for nearly 2 decades. I follow migrane.com and read news letters for several reasons. For FMS also there is no established solution just like migrane in mainstream medicine.

    But emotional suffering or disturbance and quality of life for both conditions have certain similarities. The same is true for multiple sclerosis (MS). So I read lot of stories from other similar disorders and learn whatever I can.

    I can completely relate to your emotional struggle.

    Your words – engaging in a battle that cannot be won – tickled me to comment.

    I understand what you said. I also feel the same at times. But there is a solution in alternate methods – like naturopathi. Which helps to build overall health rather than dealing with symptoms only.

    The following gave me excellent progress after 20 years of struggle.

    1. fasting – weekly 24 to 36 hours
    2. daily eating window – 8 hours (or 16:8 fasting)

    combined with – healthy diet

    3. organic and whole grains (millets only – no rice and wheat)
    4. lots of fruits, greens, vegetables including sprouts (partly or half cooked)

    I am from India and I have spoken with so many people who completely recovered with above methods from various disorders.

    And optionally dietary supplements for quick and faster results

    5. plant based protein (helped me to build muscle mass and alleviate pain)
    6. noni juice – I tried few brands before settling to one (helped me to gain energy, good sleep and emotional wellbeing)
    7. natural multivitamins (only premium brands gave me good result)

    Initially it seems difficult. But as you progress it will be easy.

    And moderate physical activity:

    8. Yoga combined with regular body massage.

    I do BKS Iyengar yoga, Thai Chi also works well. But the trainer should have knowledge and experience on how to help you recover.

    I recommend you to try and see if you also benefit from the same if you have not tried. If you have tried and did not see result, please try again under related experts guidance. I am sure you will find progress. I started to see progress after my second try, first time I was disappointed. Second or third time after fine tuning the process and my body adapted to ‘health building’ process I started to see good result.

    All the best to win your battle and live healthily.

    Please let me know if you need more help to understand natural ways of gaining health.

    Hari

  • Hari Emani
    3 years ago

    Experience of fasting and migraine are shared in the below link. The comments starting in the middle of the page are interesting.

    https://thefastdiet.co.uk/forums/topic/migraine/

  • Hari Emani
    3 years ago

    Leynal,

    I understand your concern.

    While fasting those who are healthy may also get migraines. But under fasting or raw food diet experts guidance, I am sure you will know how to manage yourself towards health.

    It is a matter of further exploring.

    I live in India, I tried various methods for several years. Initially my body reacted and I felt raw food was not for me, and none of them work I had no solution.

    After I started good nutrition (both natural dietary supplements and millet only diet), and when I try raw food for the second time or third time, my body responded well and I am improving. Now I cook little or steam for comfortable eating.

    Now I am planing to take experts guidance to fine tune my fasting and diet habits and completely recover.

  • Hari Emani
    3 years ago

    Please see someone who completely recovered from migraines and obesity from raw food.

    http://www.raw-food-health.net/about-the-author.html

    I read lot of recovery stories from all disorders to inspire myself and be confident that I become healthy too.

    My intention is to encourage all of you to try something based on others experience.

    Best recovery and healthy life.

  • Leynal
    3 years ago

    Hari- I am not trying to speak on Hollybees’ behalf but as a Chronic Daily Migrainuer myself I know that we cannot do any fasting because of migraines. 😉

  • LizziesAxe
    3 years ago

    This article really hit the nail on the head. I am fortunate to have people around me who understand that if I wake up with a migraine, simply cancel the day, whatever it holds. There are also people who think that I am just trying to get out of something and use it for an excuse–especially social events.

    This is an article I am passing along to those who do stick by me and my unpredictable migraines, just to let them know they are truly wonderful people and I’m glad that they are in my life.

  • jns192 moderator
    3 years ago

    LizziesAxe,
    We are so glad that you were able to relate to our article. I thought you might also find this article interesting on the importance of the support of family & friends. https://migraine.com/blog/the-support-of-friends-and-family/
    Thanks for being such an active and positive member of our community.
    Sincerely,
    Jillian (Migraine.Com Team)

  • Juneleaves
    3 years ago

    I can so relate to this problem. I’ve lost more than a few friends because I can be unreliable and if I do make it out I’m either recovering or incredible anxious because I simply don’t know how my life is going to unfold over time. I feel like Sisyphus pushing a rock up a hill only for it to roll back down.

    The cancellation issue, or often running at half mast when I force myself out of the house makes me feel utterly self conscious about my situation. It’s not like I have exciting plans about new projects, work or the future because so often I’m just getting through the day or trying to keep up with basic life responsibilities. I try not to complain, but superficial polite relationships can be a challenge.

    Ironically I present really well to the world, especially when I’m feeling decent and having a good week. this too can be a problem in its own strange way. People judge, “You look fine, drink more water, get more sleep, take this miracle supplement” etc… are well meaning but often ignorant comments. And they don’t see me laid up in bed, housebound. Most people just don’t want to hear it.

    I’ve been on disability going on 6 1/2 years now. (I’ve got a few other chronic health problems which lay me up and trigger headaches.) And although disability has allowed me to make significant life alterations, lately I’ve been incredibly depressed and often lonely watching the world go by.

    I’m in my 40’s and the kinds of stressed out busy lives of my peers is just baffling and I feel judged when they’re like what did you do today? If it’s a good day, I’ve gone for a hike or taken a ride on my landlord’s horse. It doesn’t change the fact that migraines are a regular debilitating part of my life and it’s made it near impossible to start an intimate relationship.

    I’ve found volunteer work can be an awesome way to interact with people. I volunteer for two different animal shelters and my few hours a week for each one is totally 100% flexible. I meet people who are kind and I pretend to be a well person when I’m able to make it. This is actually not such a bad thing!

    But still, the world expects us to be busy busy and the fact that people often schedule lunch/walking dates 2-3 weeks in advance is super challenging. The few people I’m friends with know I might have to cancel or might show up a bit dragging and spaced out. I hold these few people dear to me.

    But in all honesty, it’s a challenge.

  • Leynal
    3 years ago

    Wow you just summed up my life! The friends with busy lives while you do nothing… Me. I used to be super busy too. And now I’m laid up. And I totally agree about how having an invisible illness makes it more difficult. People assume you are ok. It’s really hard….

  • Sarah
    3 years ago

    I’ve been blessed. I have several people around me who “get” me. I have that one friend who never questions if plans get changed or I don’t answer for a while. And I have several friends and acquaintances who also get them, so if it’s not me canceling, it’s them. And that’s okay. I’m not currently on the chronic list. We managed to find something that works for me, for now, so my cancellations are fewer and farther between. I am pursuing a degree in education and even my cooperating teacher has been great about them. (I had an attack last week that refused to be treated and had to cancel my first days in her classroom, which made me super sad.) I took my first trip to the ER last fall and had my first 911 call last spring with these for myself…and I’ve been blessed…my friends, coworkers, managers, and sister were right there with me through whatever I needed. I’m still trying to discover what exactly triggers each one. It seems to be different every time, but I’ve figured out the most common symptom and make sure to warn people who spend a lot of time with me and give them permission to either get me the apple juice (I crave it…) and make me drink it, or tell me to take my meds. I don’t know what I’d do if I didn’t have those few (yet more than I realized) friends surrounding me…

  • jns192 moderator
    3 years ago

    Sarah,
    Thank you for your comment! It really makes all the difference in the world when you have the support or family & friends.
    It is great that you have found something that works to decrease the number of migraine attacks you have.
    As far as pinpointing triggers- that can be a a challenging task because there are so many. However, we have several articles on triggers that I thought you might find helpful.
    https://migraine.com/blog/migraine-management-essential-trigger-management/
    https://migraine.com/blog/triggers-by-the-numbers/

    It also may be helpful to log your triggers in an app (or journal!)- Personally, I have been using Curelator.
    https://migraine.com/blog/keeping-migraine-diary-basics/

    Good luck with your degree!
    -Jillian (Migraine.Com Team)

  • Marcus
    3 years ago

    Couldn’t have said better! Thank you for your honest appraisal of how life is for chronic daily migraineurs. While true friends/family may be few, they are worth their weight in gold.
    Again, thank you!

  • Meaghan Coneys moderator
    3 years ago

    Hi Lori,

    Thank you for your comment. We are so happy to have you a part of our community at Migraine.com. It sounds like your tears were tears of gratitude for that person in your life who really understands you. It is so wonderful to have someone on your side when it maybe seems that no one understands you and what could be described as your daily battle. I am also sorry to hear that your large family does not understand. Here is an article which you may relate to and may potentially provide some solace – https://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/. You are not alone in your feelings. Furthermore, you mentioned the difficulty of enduring the stigma associated with migraines. The following articles address the stigma in various forms – https://migraine.com/?s=stigma&submit=Go. You may find them helpful.

    Again, thank you for sharing. Please feel free to reach out to us again at Migraine.com at any point. We love hearing from you. Wishing you all the best.

    Warmly,

    Meaghan (Migraine.com Team)

  • Lori
    3 years ago

    This really struck home with me. And made me cry…because there’s one friend who “gets” me… and many family members and other friends who don’t understand, and seemingly never will.
    After more than 40 years of struggling with an incurable invisible illness, the stigma and misunderstanding and condescension are almost as bad as the neurological deficits and pain.

  • Marcus
    3 years ago

    My heart went out to you, Lori. At least within our community of migraineurs, you can find support and understanding. At least I hope so. Your physical journey is painful enough, without the added baggage.

  • Sarah
    3 years ago

    I understand…and sometimes cry simply because of that “one” friend…which this confuses him more. Hahahahahaha. And yet…he’s been there for me through it all. But he’s not the only one and I’m so thankful for that.

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