It’s no secret that Migraine keeps a lot of us from going out into the world and enjoying our lives. Often we’re forced to pick and choose what is most important, which ends up being work and family and our social lives fall to the wayside.
I was honored to be invited as a guest to attend the Evening of Hope hosted by To Write Love on Her Arms downtown Charleston. The event helps to bring awareness to mental health and a silent auction is held to raise money for the cause.
So how did I, the often couch-ridden, tucked away from society at large, severely disabled by migraine and all it’s subsequent symptoms, manage to make it to a cocktail party and have a good time?
Here’s the tips that got me out the door, through the party, and through the days that followed:
Tip #1: Take Your Time Getting Ready
Hair, makeup, getting your outfit all planned out… it seems pretty straight forward, but trying to not use up all of our energy getting ready is quite the balancing act.
I planned out my outfit the day before to make the day of a little easier, and I forced myself to stick with the decision I’d made even though my mind was full of questions: would I be too cold? Was my outfit too formal? Did I pick the right shoes to be standing in for an undetermined amount of time? I had to insist that yes, my decision was good.
I was overcome with fatigue, and had to push myself to do my makeup. I rested for an hour afterwards and decided that continuing to get ready through the brain fog and executive dysfunction would be worth it, and if I could just manage to get my hair done I’d be good to go.
Accepting throughout the day that my symptoms were going to ebb and flow was the hardest part. By late afternoon, I was tied to my couch convinced there was no way I’d be getting back up. But a burst of adrenaline hit me and I managed to get myself out the door.
This was one of those decisions where I knew that I didn’t feel good, but that getting out for a few hours with a good friend would be well worth the extra rest and the risk of a painful attack the next day.
Tip #2: Eat Before You Go or Pack a Snack
Often cocktail parties have hors d’oeuvres and desserts, however the key to having a successful day means sticking to a specific routine. Attending a cocktail party doesn’t mean I can throw my eating schedule and habits out the window.
Social events often don’t have ingredient labels out, or even easy access to someone who can guarantee there’s been no cross contamination of various ingredients that can worsen a host of chronic illnesses.
The secret is to eat ahead of time, to ensure you’re getting a full meal. Another option is to bring a small snack that you can eat at the event while everyone else is also eating, which can help with the inevitable “why aren’t you eating?” questions.
Tip #3: Have Go To Talking Points
If you happen to be like me, the common “what do you do for a living?” question tends to stop me in my tracks. I don’t particularly want to get into details about being on disability, or that managing my chronic illness is a full time commitment.
Many conversations aren’t meant to be deeply personal, so having a few responses you can use instead is pertinent.
For example, I always say that I’m a writer. If I need to expand, I say that I write about migraine and disability and mention some advocacy work. Sometimes it’s a good segway into an actual conversation, but most of the time it’s simply an answer and the conversation moves to the next topic. No nitty gritty details required.
What can your talking points be? Maybe you have a hobby that distracts you from the pain or helps you pass the time like painting or crocheting, you can say you’re an artist. Binge watch a lot of Netflix? Maybe there’s a specific genre and you talk about it occasionally, you can be a horror critic or creating a collection of reviews for a sub-genre “x.”
The point is, you aren’t going to see these people again and there’s an awkward pressure to divulge parts of our lives, but we can control the narrative and focus on the little things in life that we do love and are passionate about.
Tip #4: Be in the Company of Someone Who Gets It
I’m very fortunate that my best friend who invited me, also has Migraine, but being in the company of a friend or coworker who can be an ally for the night is probably the most important thing we can do for ourselves when branching out of our comfort zone and attending social events.
Ask yourself if you can pull the person you’re with aside to let them know how you’re feeling, or that you may need to leave early. Is this person someone you feel comfortable with that will be compassionate towards your needs? If it isn’t someone who already knows the ins and outs, consider checking in with them beforehand and asking if they can be there for you and explaining your needs to them to help make the evening more comfortable.
It can be simple like limiting how long you stand next to the table of food that is really making you nauseous. It can be moving to a quieter area of the venue, or finding a place to sit rather than stand and exert the extra energy.
Maybe it’s even a little more disruptive, and it’s someone who can help you get home or leave early with you. Perhaps it’s simply playful and they take your photo while holding their glass of champagne because the photo is cuter with a champagne flute than a water glass.
Feeling confident that you don’t have to mask all of your symptoms and hide your pain from everyone gives you the ability to honor your needs, and ask for assistance if necessary.
Tip #5: Avoid Blaming Yourself For Having a Good Time
I did not feel good one bit at the beginning of the evening. Getting out the door was only the first half of the battle, but I was intent on enjoying my evening.
I was very overheated, felt like I was trapped in a stuffy container, and incredibly nauseous while putting on a brave face and making conversation with people I’d never met. I even pulled my friend aside letting her know that I was not doing good at all and may have to duck out. But it passed, we found a quieter couch to sit back on and continued to enjoy the company of other attendees for a while longer.
We left early. I went to bed in pain. I spent the next day enduring a severe migraine attack, that I expected.
But choosing to attend a social event and forgive myself in advance for pushing a little too hard, and not placing blame and wishing I’d simply not gone, is the most important takeaway.
The event may end, but when you’re chronically ill, you still have to deal with your body responding to increased stimuli and potential triggers for days and even weeks afterward. Choosing to hold yourself with compassion may not reduce the fallout, but it allows you to enjoy yourself in the moment.
Social events may be few and far between, canceled more often than not, and traded in for easier evenings spent watching a movie in pajamas, but on the special occasions here and there, we can have a great time while continuing to honor our health and our needs.
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