“Your disease doesn’t define you. Your disability doesn’t define you. You’re more than your pain. Oh you only have migraine that doesn’t mean that “x” is affected.”
I’ve heard it all. Those are the loudest and most intrusive minimizations I encounter almost every single day living with migraine.
But it doesn’t stop there.
How can I strive to bring awareness to the issue when most people don’t listen or worse, they do listen and it never registers on a deeper level? How to I assert that the boundaries I’m sharing and trying to enforce aren’t me being dramatic or too needy for too many things?
Because although society echoes those first statements day in and day out, fighting against those I love and earning respect for the boundaries I require, is a much bigger and more important battle.
Today, I’ll fight it by comparing myself to my (struggling) fern.
If your houseplant has bugs, you isolate it and treat it. You identify the problem, and in the process of treating it, you do not punish the plant by deciding to stop giving it water.
Now, houseplants can have a lot of problems and little irritants that need to be addressed. What if we thought of all of the areas in my life where I have to create boundaries as no different than the needs of your houseplant?
My needs that exist because of migraine touch every aspect of my life.
Having a conversation makes symptoms worse.
The sheer act of pushing through words and putting together thoughts to make a complete sentence is exhausting when the brain is in pain.
Sometimes talking is enough to become too nauseous to carry on.
Participating in a conversation where voices get louder, or multiple voices speak at once increases pain.
Volume increases pain.
Distractions decrease the ability to focus.
Physical touch makes symptoms worse.
Migraine comes with something called Allodynia – I describe this best as the whole body becoming more sensitive rather than the pain and sensitivity remaining isolated to the head. This means that physical touch and *everything* I touch has to have extra consideration. This sensitivity can either create pain in the place where skin meets object or can increase whatever symptoms are being experienced. Picture a Mimosa plant where the leaves curl up every time it’s touched.
It’s the awareness of asking for consent before giving a hug or nonchalantly patting someone on the head or shoulder as you walk by.
It’s having a very specific type of sheets.
It’s being incredibly aware to a change in laundry detergent because the clothes come out with a slightly different texture or stiffness.
It’s not wearing chokers or turtlenecks or even a standard T-shirt because the neckline touches the neck making the sensitivity worse.
It’s wearing your hair in a lose braid rather than a ponytail or bun because your hair follicles are painful.
It’s opting out of taking a shower some days because the water hitting your skin feels like daggers.
The entire concept of food becomes a barrier.
It’s playing a game of “is something in my food making me feel worse?” for months to years on end.
It’s managing digestive issues that may point to another condition all together, but could also just be symptoms of migraine – because the gut is considered the second “brain” in our body.
It’s carefully planning out every consecutive meal so that if you do eat one thing that has in the past been problematic your next meal doesn’t also contain something problematic.
It’s eating hours after you wake up because in the morning you tend to get sick if you eat too early.
It’s eating more expensive foods.
It’s taking much more time to cook foods from scratch.
It’s going to the grocery store more often because so much of your diet relies on fresh foods and planning out meals too far in advance doesn’t allow the day to day and week to week changes of what your body will and will not accept as an offering.
It’s eating at the same exact time every single day to balance out medications and to not allow your body to divert from a level of consistency – for example you want your blood sugar levels to stay super consistent all day long, if they fall, you face consequences.
It’s focusing some days on simply managing to eat. Just eat the meal. One bite at a time. Don’t get sick. And three hours later do it again. Because if you don’t eat your symptoms get worse, and if that period of difficulty eating lasts too long, you’ll stagger towards being underweight.
It’s fighting off comments about your weight and assumptions from doctors regarding eating disorders when it’s really just migraine.
Energy isn’t a given and how it get’s used up isn’t consistent.
Perhaps we replace the spoon theory with the “plant during growing or dormancy” theory. And your plant is struggling because last week was a warm growing season, and now it’s a cold dormancy season, but next week may shift back to growth.
It’s realizing that putting on mascara uses more energy than half an hour of yoga.
It’s recognizing that there’s physical energy levels, mental energy levels, and emotional energy levels and then racking your brain to figure out where each energy level is.
It’s knowing that by 2:30 PM – 3:00 PM you should probably lay down if you want even half a chance to stir your dinner on the stove for 5 minutes while it heats up.
It’s spending half of your waking hours blankly staring at a wall because even scrolling through social media requires more focus than you have.
It’s spending the day before and the day after a doctor’s visit resting.
It’s choosing not to drive places because driving could exhaust you before you have the chance to get home.
It’s forcing yourself to only occupy your mind with a single task – even if you notoriously do multiple things at once – so that you can finish the one task in the expected amount of time.
It’s choosing to watch a show or movie that doesn’t demand critical thought at the end of the day because your brain has clocked out.
It’s being okay with planning to accomplish something in a time period lasting a few days, rather than a specific hour of a specific day.
Anything involving senses must be addressed too.
It’s having digital clocks because the ticking of a regular clock can become too loud.
It’s using mainly ambiance lighting, because overhead or florescent lights are too bright, too harsh, and may flicker.
It’s actively avoiding cooking smells, candles, perfumes, and pumping gas.
And so I have boundaries.
For every single thing there is a boundary to match, despite how uncomfortable the boundary makes other people feel. Because YOUR temporary dissatisfaction is much smaller than making my pain and symptoms worse.
Now take every “it’s” statement and apply it as something for that plant you probably overpaid for, that you want to keep alive.
I’m like my fern. I require plant food. I require much more water. I have to be misted constantly throughout the day because I need consistency and humidity. If the air or the heat blows on me I’m going to break down and die. I need light, but the wrong kind and my leaves will burn. If you touch me, I might die. I try to show you in different ways what my current needs are, but if my language is a wilted leaf and I can’t show other signs of distress, those needs may not come across easily. Sometimes the distress that you’re seeing is left over from something that happened a month ago. Sometimes it’ll take another month to see the progress from improving how you tend to that distress is working.
But if my needs are met, consistently, I’ll do alright. And because I’m just like that finicky house plant, once you find the balance that really works, it cannot be abandoned or I’ll die.
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