How I Navigate Having a Social Life While Living with Migraine

Social Life While Living with Migraine

This post is sponsored by Amgen. Please consult your doctor for medical advice. My opinions and experiences are my own.

Living with migraine makes me miss out on important events and celebrations throughout the year and can impact my social life.¹It has for years. Making and canceling plans is frustrating and now that COVID restrictions are lifting, I again have to balance migraine triggers with having a social life.

I have included some of my social triggers below for you to consider and prepare for, along with tips that may help avoid missing out because of a migraine. For more helpful resources about migraine, visit Know Migraine Mission.

How Does Migraine Affect My Social Life?

Migraine Triggers and Social Life

For me, there are many triggers that surround social events. I find myself asking, “What will I be walking into?”
  • What will I smell?
  • How bright will the lights be?
  • How loud will the music and background be?
  • What are we eating and drinking?
  • How many people will be there?
  • Will I be able to attend at all?

If I have migraine symptoms before the event, I weigh canceling plans against going with the possibility of leaving early. I think about who I will have to explain my situation to and how I will articulate that migraine is more than a headache.² Do I stay home and miss out completely? Do I save my energy for one event while skipping another? It’s all very complicated with no real answers and I feel like I often guess wrong.

Why Do I Get a Migraine Attack When Socializing?

I have found that the following triggers can often cause migraine for me when I am socializing.

Smells

Smells highly impact my social life. When the smells hit my nose, I can be triggered instantly. Smells from scented candles, food, and perfume can all trigger a migraine for me. I’m sensitive to these specific smells, but the experience may vary for each individual. During social events, people often wear perfume and cologne, which sometimes prevents me from standing next to or talking to certain people.³

Lights

Lighting can also trigger migraine.4 Sometimes LED lights can blur my vision. Flashing lights make me dizzy. Bright lights hurt my eyes to the point where I have to look away. A room with harsh lights is a trigger, and I have to leave. Overhead lights are bright and often too much for me to handle.

Sounds

I find certain noises, such as music and loud background crowds, very triggering.4I find that background noise makes it difficult to catch up with loved ones I don’t see all the time and drowns me out of the conversation. My social life no longer revolves around concerts and loud bars; I now opt for quiet dinners and more intimate groups.

Food & Drink

A major part of my social life involves food and drinks, but my relationship with the types of food and drinks at social events can be complicated. I am triggered by many foods, which makes it difficult to snack easily. Alcohol triggers me. Although I would love to have a drink with my family every once in a while, I choose water and hydration over wine and cocktails.3

Making Plans

It’s hard to make commitments when a migraine attack can wreck your plans at any moment. I know I am not alone, based on an online survey, 87% of people with migraine say it has affected their professional, private or social life.5In addition, studies of people with migraine have found:

  • 64% reported migraine affecting their private life including relationships with friends, relatives, and partners5
  • 52% had missed important events5
  • 50% had avoided making commitments5

People

Above all, the people I am with determine how I feel about my social life with migraine. If I am at a huge event, I feel overwhelmed by the trigger possibilities. If it is a smaller event, I may be able to avoid some triggers. If I cancel or leave early at a major event, no one will notice. But if I’m at a small intimate event and I cancel or leave, I have to explain why I need to go, which can be daunting, embarrassing, and disappointing to both me and the host.

My husband and children are often faced with having to navigate these explanations as well, and we often need to leave events or cancel because of me.6 Once again, it feels awful to miss and to make my otherwise healthy husband miss out on fun celebrations and I feel it is unfair.

Tips for Managing Migraine and Having a Social Life

In my experience, managing migraine triggers takes effort and the things I do can usually help minimize, but not fully eliminate triggers. There are some things I can prepare for and other things I have to take in stride. My social life is a slow,turtle-paced marathon instead of a sprint. Slow and steady migraine management wins the race. The best thing I can do for myself is to be consistent and stay calm.

What Do I Do When Migraine Affects My Social Life?

Before any upcoming event or trip, I prepare my body and mind for the special time. I keep a schedule with sleep, eating, hydration, exercise, and self-care to get my mind and body in the best shape they can be in. I set boundaries before I arrive by telling my family about my triggers and what my body needs.

In addition to managing my triggers, I talk to my doctor regularly and stay informed about migraine management options, including medications that are preventive treatments for migraine in adults.7,8 For more information about one of those preventive treatments for migraine in adults, click here. Prior to busy times of the year, I schedule an appointment with my doctor to discuss migraine treatment that works best for me. Of course, everyone is different so be sure to ask your doctor about what might work for you.

Be Prepared

Migraine Tool Kit

I bring my migraine tool kit to my social events. Depending on how large my purse is, I’m always sure to bring medication and products that help ease my symptoms.

Escape Plan

If all else fails and I need to leave, knowing a good time to step away is helpful. If there is a schedule for the evening, I check to see when an inconspicuous time to leave would be. Or maybe, I attend dinner but skip after-dinner drinks. My husband and I will often come up with a key phrase or hand signal that alerts him that I need to go. My migraine can be unpredictable at times, so keeping an escape plan is important.

Communicate with Family & Friends

One of the hardest things to do is to set boundaries. While socializing, my migraine disease is often misunderstood.9 I can’t take a vacation from my migraine; it goes where I go. For me, traveling can induce stress, and when I am traveling, I am likely to be triggered and need extra time in a dark room, most likely icing my head.3If we are visiting family or friends for a week, I won’t be able to participate in planned activities morning, noon and night. I will need to pace myself, make priorities and inform the people around me.

Being honest is hard and facing criticism is harder. I have learned that explaining my triggers and how I feel is very difficult but important so that we are all prepared if I need to step away or cancel at the last minute.6It is not ideal, but I manage my time and energy to best fit what is most important to me.

Eat Mindfully

If I think there will be a lot of trigger foods,3I often bring my own appetizer, dessert, or entree that is migraine friendly, so at least I know I can have something that works for me. Not eating is a trigger for me so skipping a meal at a social event is not an option.3 It’s important for me not to skip meals and to stay consistent.3I would love to freely enjoy the dessert table but being conscious of how food makes me feel is a reminder to proceed with caution.

I highly recommend speaking with your doctor to discuss lifestyle modifications that may help your migraine.

Connect with Others

Take it from someone who’s been there –it can be frustrating when, despite careful planning, migraine interferes with a much-anticipated social event. For these times, I’d encourage you to find a support group, find a Facebook group or connect with my Facebook page on My Migraine Life virtually because you are never alone!

The information provided in this article is not a substitute for professional medical advice, diagnosis, or treatment. You should not rely upon the content provided in this article for specific medical advice. If you have any questions or concerns, please talk to your doctor.

References:

1.Lipton R, Bigal M, Diamond M, et al. Neurology. 2007;68(5):343-349.

2. Russo AF. Annu Rev Pharmacol Toxicol. 2015;55:533-552.

3.Kelman L. Cephalalgia. 2007; 27 (5): 394-402.

4.Headache Classification Committee of the International Headache Society (IHS). The International Classification of Headache Disorders, 3rd edition. Cephalalgia. 2018;38(1):1-211

5.Martelletti P, Schwedt TJ, Lanteri-Minet M, et al. Journal of Headache and Pain.2018: 19(115): 1-10.
6.Buse D, Scher AI, Dodick DW, et al. Mayo Clin Proc. 2016;91(5):596-611.
7.Diamond S, Bigal ME, Silberstein S, et al. Headache. 2006;47(3):355-363.
8.Silberstein SD. Neurology. 2000;55;754-762.
9.Rutberg S, Ohrling K. Disabil Rehabil. 2012;34(4):329-336.

 

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Sarah Rathsack

I tell stories of My Migraine Life. Living life through Migraine consists of advocacy, treatment, prevention, and searching for health and happiness in a positive honest way. My kids, husband, dog, family and friends motivate me to make a difference in the Migraine World.

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