Overcoming Social Isolation in Migraine Disorder

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Migraine headaches are excruciatingly painful, exhausting, and scary, but almost worse than the head pain and nausea of migraine disorder is the inevitable sense of isolation– the feeling that you are alone, adrift on a raft amidst a sea of tumultuous waves of pain.  Social isolation is common in chronic pain illness, but by learning some valuable coping skills, you can beat the odds.

One migraine is a lonely number

If you suffer severe migraine attacks-, consuming headaches that prevent you from doing anything but lying in a dark room for hours until the pain recedes- then you’re likely to spend a lot of time by yourself, possibly hours, perhaps days.  For many who get chronic migraines, there is no other option.  Unfortunately, for many migraineurs, the isolation lingers long after the pain disappears.

Fear is…well, fearsome

The need to curl up into a cocoon is physical and mental at the same time, and it’s motivated by fear:

Fear of having a migraine attack when you’re unprepared

This is probably the number one reason that many migraine patients choose to stay home between migraine flare-ups.  It stems from an underlying fear of losing control, which is a symptom of anxiety.  In some cases, fear of having an anxiety attack (or migraine) is worse than the attack itself!

What you can do: If you’re anxious about traveling or going out to eat at a new restaurant, then prepare an emergency “escape plan,” but only use it if you feel strong migraine attack surfacing.  Assign a designated driver.

  • Print out a Google map of nearby pharmacies and emergency clinics.
  • Store a bag of necessary medical supplies in your purse, laptop bag, or car glove compartment.  Include things like a spare pill bottle with migraine medicine, disposable cold/hot packs, and a sleep mask.
  • Make copies of your medical records, and store them on a flash drive.  If you do have a severe migraine that requires attention, then it will be a lot easier to get help from busy ER doctors if you have proof that you’re not just suffering from a common headache.

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Fear of letting others down- friends, family, coworkers, or caregivers

Chronic illness doesn’t just affect the patient- it permeates over your entire social network.  Friends want to help, but don’t know how.  Coworkers feel awkward, and some make insensitive remarks.  (You’re so lucky you get to stay home!)  Your spouse and children, not realizing the severity of your pain, have unrealistic expectations.  (Mom, can you take me and my friends to the mall after dinner?)
What you can do: You can have a healthier relationship with your friends and loved ones, but it’s not going to happen on its own.  Visiting a family counselor is an excellent way to strengthen communication, providing a safe environment for family members to say what’s on their minds, no holds barred.  You get to air your grievances, they get to ask what’s been on their minds, and a nonbiased professional directs your communication towards the common goal of finding some real solutions.

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Fear of changing social or personal roles

You were once voted most likely to succeed, but now you feel like you’re most likely to wind up in a coma from frequent migraine attacks. It’s hard to go from being the caregiver to being the caregiven.  Once upon a time, you were the decision maker in your marriage…now the roles have switched, and you’re sometimes astonished (and disappointed) at your loved one’s ability to step in and take charge while you’re in the throes of a migraine. When things change drastically, you sometimes want to pull down the curtains, close your eyes, and pray for things to go back to the way they were- before migraines.

What you can do: Rethink the notion of roles.  Who you are is a role that changes invariably, with or without your approval.  You are more than your job title, your illness, or your Facebook username. Like the caterpillar that creates a cocoon and emerges as a butterfly, you can look deep inside yourself, do a mental inventory, and come out empowered.

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Fear of losing control of anger

Migraine stigma is the pits- try as you might to rise above it all, some people will continue to disappoint you every time.  We’ve all been in a situation when we’ve felt that others were judging us unfairly or denying us our basic human rights.  Still, that is no reason to pull away from society altogether.

What you can do: Join a community with other migraine patients like yourself! Start by asking around at local hospitals.  There might be a support group in your area where you can shoot the breeze with other chronic pain sufferers who know what you’re going through.  Remember, it’s not called complaining when the feelings are mutual. If you’re a techie, then scour the internet for blogs, online support groups, migraine awareness groups, and social media sites that cater to migraine disorder. By joining even one small Facebook group, you feel less alone, and less likely to lose your temper the next time somebody makes you feel like an outcast.

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Social isolation: a practical guide for nurses assisting clients with chronic illness- PubMed, NCBI

Fears and Depression In Chronic illness