I’ve always imagined my head is like an egg.
It’s balancing on top of my shoulders and ready to crack at any time. I can feel the hairline fracture just above my left eye.
The smallest strain can crack the egg and give me a migraine that can last for days. A quick jerk of my head in traffic, an open cabinet door that I bump my head into, a stumble on the sidewalk where I catch myself yet jostle my head, these are all enough to crack the egg.
Once the egg cracks, my mind races determining the severity of the crack. What does my day look like? Do I have children dependent on me? What medication is at my disposal?
If I’m away from home, I try to get by on taking migraine medication and over the counter meds simultaneously, assuming I have both, and go about my day.
As I swallow the bitter medication, I’ll consider what I will do if it gets worse. How long until I can make it home? Where is the closest dark room where I can lay down? Do I have access to an ice pack to numb the pain? I map out a plan and assess the situation before the pill is entirely down my throat.
I take a deep breath, and if I’m with you, I will calmly turn to you and smile without a word.
Explaining to someone how bad my migraine can be and listening to their ideas of how to make it better is too tiring.
We may have known each other for a couple of years, and maybe we’d even say we’re friends, yet I might never tell you about my chronic pain. If it does come up, I’ll downplay the role migraines play in my life.
I’ve found there’s little point in letting others know about my invisible illness.
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Friend’s reactions often leave me feeling disconnected. It usually goes something like this:
You might tell me what I need to do to cure my illness. You know someone who tried Essential Oils/Botox/magnesium/cryotherapy/Pyramid Diet, and it worked for them.
I’m then obligated to explain why the prescribed remedy didn’t work for me.
This approach is too exhausting for me to relive, so typically I’ll lie and say with what I think looks like a smile, “Sure, send me the information, I’ll look into it.”
The truth is that I don’t want to discuss remedies. I know what my options are, and I’ve tried almost everything. I’ve lived with this pain for over three decades.
Or the exchange goes something like this: I am brutally honest with you about my pain.
I’ll say that I can tell already I’ll have to decline your upcoming girl’s night out that you’ve been planning for the last month. Some days, heck, some weeks, the pain causes me to have a finite amount of energy that I must conserve. Any extra energy I have will go toward caring for my children.
If we have this exchange over text, the text bubble on the screen suddenly goes away. Eventually, I’ll receive an off-beat, cheery response of “Darn it, we’ll miss you!” I know immediately you don’t understand and wish I would have just lied on the night of your event.
There’s also the helpful friend who says she knows just how I feel. She gets migraines too, and that’s why she takes Excedrin Migraine. I can only smile at this friend through gritted teeth.
What would I like to receive in response?
Understanding. Empathy. Grace.
But how do you show a friend or family member who suffers from a chronic illness or pain understanding, empathy, and grace?
Occasionally, I’ll stumble across someone who will empathize and offer no solutions. Usually, this person suffers from pain too. Maybe it’s not physical pain. It could be heartbreak or mental illness, it doesn’t matter. This person innately knows how to do all the right things. And those things don’t include “doing” much of anything.
But you don’t have to be a fellow sufferer to empathize.
Just be there for me. Listen to me.
You can’t fix my illness, and I don’t expect you to. I simply need someone else to shoulder my burden for a minute.
It’s so meaningful when a friend follows up with a text a couple of days later if I’ve missed an event due to my illnesses. This so rarely happens that these people stand out in my memory.
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I often hear things like “I was thinking of you!” or “I meant to text,” but the few that take two minutes and send a text are golden.
Once I texted my mom’s group that I wouldn’t be able to make our get together due to a migraine. I received a couple of the typical responses of “get better!” but one acquaintance said she was bringing over dinner. We can’t do this for everyone all the time, but in 30 years of suffering from debilitating migraines, this was the first and only time a friend has tangibly met my needs.
Please don’t tag me on Facebook about a new cure. Instead, tag me for a coffee date. I want nothing more than to get out and be normal.
Try to remember this illness is part of my life. Don’t make group plans to places I won’t be able to go to.
Just as I remember that you’re married to a recovering alcoholic, so I won’t bring a bottle of wine to your house. Friends are sensitive and honor each other’s limitations.
Lastly, the looming pain follows me everywhere we go. Friends make me laugh and forget about the egg on top of my shoulders. So, that’s enough about me, tell me what’s going on with you?