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Migraine’s Negative Impact on the Support System & How to Rebuild It - PART ONE

Migraine’s Negative Impact on the Support System – Part 1

In this two-part series, we discuss ways that migraine challenges our relationships, while illustrating why a strong support system is key for those who have this disease.

How migraine decimates the support system

While we all wish we had the strongest support system in the world, comprised of compassionate friends and family just waiting in the wings to swoop in and provide tender love and care and logistical support at the drop of a hat, few of us do. Migraines have a way of testing even the strongest of ties.

Pulling focus inward

Relationships are a two-way street. Creating and maintaining compassionate relationships takes time and energy, after all – two things people with migraine have very little to spare. Making and keeping healthy connections with people means staying in touch about each other’s lives. Ideally, it means spending time together on a regular basis. People battling chronic migraine have a challenging time staying in consistent touch. When fighting off an attack, we must pull our focus tightly around us, like a blanket.

In some ways, migraine forces us to be a bit self-centered. A migraine attack demands an immense amount of attention. We use every resource we have to respond to the onslaught of symptoms including nausea, vomiting, severe pain, lack of ability to speak, extreme sensitivity to light, sound and smells – just to name a few. Any assertion of energy in an outward direction can literally make the pain worse. The idea of reaching out to a friend or family member to see how his or her day is going is the last thing we can consider when we are vomiting and writhing around in our beds.

Afraid of letting others down

When we do make the effort to have friendships, feelings of guilt often follow. If we make plans – we often have to cancel – which can mean letting loved ones down. The normal joyous exchange which exists between friends that includes support, camaraderie, and fun times can, for migraineurs, lead to dread and anxiety due to frequent worry over not being able to come through for those we care most about.

Isolated

The easy answer for many becomes to self-isolate. We grow tired of letting people down so we stop reaching out and trying. For some, the choice is made for them. Friends and family stop calling or coming over. Like a garden with no water or sun, relationships die off when they are left unattended. In many cases, people simply don’t understand the serious and comprehensive nature of migraine. If a migraineur repeatedly cancels or barely ever checks in or follows up, the friend can take it personally, not realizing that it is the disease at work, not the person.

Taking stock

A harsh wake up call for many migraineurs is when we realize that our support system has dwindled down to nothing. There’s no one to call when we’re feeling down- no one to ask for a favor when we need one. And migraineurs often do need help. We need logistical support when we can’t meet our responsibilities. We need a ride to the ER. And perhaps most of all, we need emotional support. Because migraine is so isolating and because depression is a frequent comorbid condition– it’s important that we have a strong support system.

So then how do we, as migraineurs, reap the benefits of a healthy support system when we cannot consistently nourish our friendships?

In part two, we’ll share some strategies for building and strengthening our network of friends and family and invite you to give your ideas on the topic so that we can learn from each other. Stay tuned!

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

  • quiet-please
    1 year ago

    I ran head first into this problem when my migraines suddenly broke through my meds early this year and I had to be signed off work for over 3 months. I always seem to end up being the organiser among my friends and once I was mostly incapable of reaching out myself I started to feel incredibly isolated and depressed. I felt, and still feel sometimes, that I had no friends who cared enough to check on me when I dropped off the map. Especially as I live with 3 housemates and none ever knocked on my door when they hadn’t seen me for days! :/

  • Holly Baddour moderator author
    1 year ago

    Hi- @quiet-please
    I’m so glad you chimed in. It can be rough to experience transition in relationships – especially when that change is brought on by a health challenge that’s out of our control. Add to that the very complex neurological disease that is migraine- which is an invisible condition, and things can get every more complicated. Most people don’t understand or know how to navigate migraine.

    It’s a disease that can cause even the most social butterfly to pull within and become an introvert in the same day.

    You do a great job describing a dynamic in which a network of friends is reliant on one person to organize outings- but when that person goes down with a migraine, the network falls apart, leaving the organizer feeling lonely. It’s likely not a matter of whether or not people care enough to check in, but more that they aren’t accustomed to having to check in or reach out because that’s been your role in the past. It can often take a while to readjust dynamics – and a fair amount of communication, education, and awareness-raising with a chosen few friends about whom you really care- to help them deeply understand what you need in a new reality that involves a much more intense migraine pattern.

    For me, it helps to forward the articles from migraine.com that resonate with me most to help educate and raise awareness among my friends and family so they can see I’m not the only one with this disease – and to help them understand what helps and what doesn’t. Here’s one that might get you started: https://migraine.com/blog/constant-cancellations-the-rare-friend-who-can-navigate/

    You are NOT alone! Please know that you are part of a huge community of millions of us who are navigating migraine each and every day. We are here to provide information and support anytime. And as for those 3 roommates? That is rough to not have any of them checking on you. It might be time to have a simple conversation with them- to let them know you are maneuvering through a challenging time with your health and that you’d be grateful for a knock on your door each morning just to check in before they leave for the day. Sometimes people need that kind of direction when dynamics have shifted and we have to ask for what we need.

    We are so glad you are a part of our community. Please stay in touch and know we are thinking of you.

  • bluesguy
    1 year ago

    What a fantastic article! I believe you have illuminated exactly what it is like to live with migraines, and how it effects every area of our lives. Thank you for putting this article out there. I am forwarding it to many close friends and family members. Your description of the shame, isolation, and depression experienced by migraine sufferers such as myself, helped me feel empowered to communicate these experiences and feelings to others.

  • Holly Baddour moderator author
    1 year ago

    Hey @bluesguy – Thanks so much for the kind words. I’m so glad this article resonated with you and that you found it worthy of sharing with friends and family members. I utilize migraine.com in the same way- to help my loved ones better understand what I’m up against so they can see I’m not the only one in the world who is dealing with this kind of struggle. Increasing their awareness about the challenging dynamics surrounding migraine usually results in their providing more compassion and support. I hope that is what happens for you. Please keep in touch and so glad you are a part of our community!

  • mrst53
    1 year ago

    For years my hubby didn’t believe a “headache” could be that bad, until he got a cluster headache that lasted 4 days. Now he understands mostly and makes dinner if I can’t .He gets my ice packs or heat packs for me if I can’t.I have one friend that kind of understands. She has never had a migraine, but she’s willing to take me to appointments when I need them.

  • Holly Baddour moderator author
    1 year ago

    @mrst53 – how interesting- (and I suppose not that surprising) that it took your husband getting a type of migraine to truly understand what you are up against with yours. It really is a condition that is difficult to comprehend for those who have never experienced it. Wonderful that you have a friend who is willing to lend a hand with the logistics of life. That can be a real life-saver at times. Thanks for sharing!

  • MrsMiMoo
    1 year ago

    My partner has put up with my migraine monster for 5 years now. I thank him for his support and patience while I cower and suffer. He has gone alone to parties and weddings while i stay at home, gone to the pub alone and holiday-ed alone while I stay at home with sumitriptan. I’m trying to be more outgoing but it’s just really difficult as you have a good day and then wait for Mr Migraine to jump on you. But we only get a certain amount off time so i’m going to try my best to get out there. New drug regime is helping (topamax and candesartin). fingers crossed. I think my friends think I’m a recluse but the close ones do understand, although they are disappointed when I don’tn turn up. Mrs M.

  • Holly Baddour moderator author
    1 year ago

    What you describe is such a common experience for so many of us. It’s so difficult to see our partners have to live a separate experience from us. I’m sure it’s difficult for them as well. I encourage my husband to embrace as much of the world as he can as I don’t want him to be held back from my migraines– but the fallout is that I live quite an isolated existence. The truth is, however, that the pain related to migraine makes it so that we can’t really be around others while we are managing an attack. As you said, it is very difficult to get out there because you never know when an attack will hit, so all you can do is try your best when you’re feeling up to it. And when you feel the judgment of others, that you are a recluse- this is something we must try to release- because it is not our choice – it is our reality. It is wondrous when we find friends who do “get it”. https://migraine.com/blog/constant-cancellations-the-rare-friend-who-can-navigate/ . Thanks for chiming in, @mrsmimoo!

  • sallyannlyons
    1 year ago

    I suffered from migraines for years, have become rare with age. I’m 76. There is more sympathy and understanding now than when I was young. An article like this could have helped me back in 1971 but no such thing existed then. I’m not a baby-boomer. Enlightenment is too late for me.
    My story: My mother suffered from migraine, back when it was often viewed as a weakness, someone unable to handle normal stresses of life, taking to bed with what she called a “sick headache”. When I was a kid, my mother had a supportive family and received sympathy and understanding. Like me, she had episodic headaches w/o nausea that lasted about 24hrs and she would go to bed in dark room with cloth over her eyes & wait for it to be over; the rest of us would be quiet and leave her be. It was no daily occurrence–more or less monthly, depending. None of us held it against her. As a young adult, I developed the same type of headache, (no nausea, just pain) it was never referred to as a migraine–migraines were a lot worse I was told and a stigma to be avoided. As an adult, I discovered the lack of sympathy in the world at large that my mother had warned me of. In the workplace I realized it was wise to just “work through it.” I never missed a day of work due to a headache. I remember one day at work someone asked me why I was holding my hand over my eye and I simply said, “I have a headache.” I never complained, just went about my work and “toughed it out.” No kudos came my way for that. Instead, I overheard things like
    “Why doesn’t she just take an aspirin or something?” or “I think she does it for attention.” I knew I’d be fine by the next day, even feel like a million bucks and might be weeks before it happened again.
    I got married in 1971. My husband was not sympathetic. To him, it was a lame excuse for whatever was really bothering me. In retrospect I think it may be why my marriage failed.
    I never talked about my headaches except to friends and family, didn’t dwell on them, never characterized them as migraines, just continued my practice of going about my business, “toughing it out” when I had one. Wasn’t always easy and when I was single I could control my social life so as not to disappoint anyone very often. Well. Didn’t work once I was married.
    I remember one event when I tried to excuse myself from a big, long-planned day on our sailboat with friends, because I had a bad headache and I’d only ruin it for everybody if I went–go ahead, I didn’t mind
    staying home by myself. My husband dismissed my headache as a lame excuse to get out of going for some reason I wasn’t willing to admit and not showing up is what would ruin it for everyone. He insisted I just “suck it up” and go. So I went and tried to “tough it out” as usual but as I suspected, being in a boat on the water only added nausea to the picture. I managed not to vomit (no kudos to me for that gargantuan feat, either) but I was unable to participate in the festivities and had to excuse myself to go below and lie down. Water was calm, no one saw any reason for me to be “seasick”. I wasn’t. I had a migraine. But, everyone thought I was being melodramatic. Didn’t go over well at all. My husband was very angry with me when we got home. The next day, as usual, I was feeling fine, in fact, euphoric–as was usually the case. The fact that all of a sudden the next day I was all better lent, in most people’s eyes, credence to the belief that my misery the day before was exaggerated at the very least if not actually feigned out of resentment or attention. We were newly married. An opinion of me was formed. As you can imagine–the frequency of my headaches increased as I realized this and began to worry over whether or not I would have one at an inconvenient time. My husband complained of my attitude and behavior. Not my headaches–he didn’t think they were real, so I didn’t mention when I had one if I could help it. I felt inadequate. Of course, I never referred to them as migraines either–thought that would only serve to further stigmatize me. One thing led to another and my marriage only lasted about 4yrs. I never married again.
    Some years later, long after I had started calling my headaches by their right name of “migraine” and they had returned to their usual pattern of pain only, once a month, more or less—I saw my former husband and told him how my migraine headaches had gotten better over the years. What migraines? He didn’t remember me having migraines, he knew what migraines were like, his current wife had them–she’s laid flat until it’s over and suffers terribly. I tried to refresh his memory over incidents r/t to me having migraine-type headaches for which he was not sympathetic. His recall was that I was able to be up and about if I wanted to, and always woke up the next day feeling just fine. His wife is completely incapacitated, sometimes for days and doesn’t wake up the next day feeling just fine. No. He didn’t know what my problem was but—it wasn’t migraine headaches, besides, he doesn’t remember me even saying I had migraines. Was glad I’m feeling better, wished me well but he doesn’t remember anything about migraines.
    Unintended consequences of “toughing it out”. Of not having migraines bad enough to prevent me from doing so. Too stoic for my own good–instead leaving the impression of making much ado about nothing.
    . Glad to see an article like this. Way too late for me, but–maybe someone in similar circumstances today will read it and do better for themselves because of it. Lot more support groups out there now.

  • Holly Baddour moderator author
    1 year ago

    What a fascinating story, @1ecjax1– So grateful that you took that time to share your background with our community. You’re so right that times have thankfully changed and that in many ways the stigma has lightened, and overall understanding of migraine has increased- but in no way is it entirely addressed. There is still a long way to go as far as that’s concerned. Migraineurs are still made to feel weak and to blame for this complex neurological disease to this day. There are not enough trained specialists, not enough medications that have been designed to treat it, not enough research, etc., etc. Still, we have so much to learn from stories like yours, in which you were doing your absolute best to manage the unmanageable- only to encounter judgment from loved ones and coworkers alike. It sounds like the situation was an absolute no-win, despite your best efforts to keep your chin up and navigate your life despite extreme pain.
    Thank you, again, for taking the time to share your story with us. So very glad you are a part of our community.

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