Failure: Empathy, not advice, for invisible illness
Having invisible illness is a certain kind of hell.
If you have one, you know what I mean. Depression, anxiety, chronic pain, migraines, the list goes on.
Last week, I had 3 migraine attacks over 5 days. I fell behind in work and school, missed important meetings. It was horrible, and I’m exhausted.
But I don’t get much sympathy for what most people think is just a bad headache. Here are actual comments I’ve gotten from family, in response to me saying I’ve just had a migraine and am not feeling well:
“You know, men get more migraines than women.” (Actually it’s the opposite, women are 3x more likely to get migraines.)
“Have you tried acupuncture?” (No, and no thank you. There’s little to no evidence it does anything besides have a placebo effect.)
“Just get a prescription to make your migraine stop.” (I’ve tried all of them and none work.)
“Have you tried over-the-counter migraine headache medicine?” (Yes, there IS NO OTC migraine medicine, it’s just regular headache medicine called migraine medicine, and it does nothing.)
“I don’t believe that people can have migraines from eating the wrong foods, that’s just made up.” (Wow, ok, well 100% of neurologists and my personal experience would disagree.)
Getting bad opinions and uneducated advice about my chronic migraine condition is useless and dismissive at best. It says to me “I don’t believe you’re in pain; why haven’t you fixed it so we can stop hearing about it already.”
Let me take you on a trip through one of my average migraines…
I’ll be having a normal day. With no warning, a spot appears in the center of my vision. It makes me feel instantly nauseated and panicked because I know what's coming. My adrenaline, fight or flight kicks in, and my heart races. I need to find a safe place, FAST.
The spot looks like a big water droplet in my vision that is filled with TV static, and it doesn't go away, it just keeps getting bigger and bigger. It feels like my vision goes numb and tingly all of a sudden, and my experience of reality shifts from normal to emotionally disconnected. From years of migraines, I know what’s coming, and disassociating from what’s to come is a survival mechanism.
My anxiety is at its peak, heart jumping, panicked. I have anywhere from 30 seconds, to 15 minutes to figure out where I’ll be safe, before I go completely blind from the static-filled, white-out, water-droplet-like spot that’s growing across my vision. This vision loss has happened suddenly while I was driving, right when I walked into the grocery store, before a big party, during a work meeting, when I was a mile away from my car on foot in the city… there’s never a convenient time to go blind without warning.
This, by the way, is what is referred to as migraine “aura”. What a terrible, soft word choice, to describe something so hellish.
It's hard to find a good image for exactly what my visual aura looks like, but here are 6 images that are all kind of similar to what it's like, if you mixed them all together and imagine them being in motion like the fuzz of TV static.
By the time I lose all vision, I'm so nauseated that I feel like I'd rather die than live through this for 10 minutes. You know that moment just before you vomit, those 3 seconds when the nausea overcomes you and you KNOW it’s coming? Imagine those unbearable 3 seconds of extreme nausea, stretched out over 6 hours or more… that’s the kind of nausea I feel every time.
Sometimes my limbs or face go numb - not tingly numb, I'm talking full on numb like I can't feel them at all. This makes me worry I’m having a stroke, but being blind and nauseated, it’s not like I could do anything about it if I were having a stroke, anyway. Usually my motor functions rapidly decline to the point where I can barely stand or move. My muscles become weak and shaky, my body feels 5x its weight.
Sometimes I experience aphasia, when you can’t think of the words you’re trying to express. I often find myself unable to form sentences or think of words. Sometimes I try to talk, and my brain is forming sentences fine, but only gibberish comes out because the wires in my brain are crossed.
My senses are all mixed up and uncontrollable. I FEEL my vision, I HEAR light. Everything is amplified… and it all HURTS. Complete darkness feels like I'm staring at the sun and it hurts. Any noise makes me feel so nauseated I can't stand it. Any smell feels like I'm being punched in the gut. And all that is just the beginning.
All of this - the vision loss, the extreme sensitivity to sensory input, the mixed up senses - is all part of this “aura”. For most people, it’s only visual (known as “typical aura”), but for the unlucky people who win the migraine lottery, it can include physical weakness, stroke symptoms, and cognitive problems, like what happens to me (known as “brainstem aura”).
This aura feels endless. For anywhere between 4 to 12 hours, I'm unable to see at all, every single little sense makes me feel excruciating pain all twisted in my head and body because my brain is mixing senses. I'm so nauseated I can barely stand it. Imagine having a terrible stomach virus, PLUS being blind, PLUS having extreme head pain and body weakness, PLUS having memory and speech problems from a stroke or concussion… all at the same time, with no warning, for hours on end.
All the while, my body goes between extreme temperatures. I end up shivering and freezing, while feeling like I’m burning up on the inside.
About 2 hours into the aura and extreme nausea, the headache starts.
Don’t let the word “headache” fool you - it's like no other head pain. The pain is so intense, no matter how many dozens and dozens of times I've felt it, I always worry if THIS is the migraine that will kill me. On a scale of 1 to 10, with 1 being a paper cut, 5 being a jammed finger, and 10 being a particularly painful and bad broken bone, my migraine pain is usually a 13 out of 10. What I mean by that is, when I’m experiencing it, I cannot believe it’s real because it’s that bad. The pain level is so extreme, I can’t talk, I can’t think, all that I can experience or think about, is surviving the pain I am in each second.
This 13/10 pain level lasts about 4 hours for a short migraine, up to 12 hours for a long one. Each second feels like minutes. Imagine a railroad spike cracking through your skull, and being pounded into your brain for hours.
Toward the end of the migraine attack, my vision starts to return. All my senses still hurt and make me want to throw up, but the staticy jumbled vision begins to fade.
The experience is excruciating, it's worse than any pain, physical or emotional, I've gone through otherwise.
Here are experiences I’ve had that I'd gladly endure again, rather than one migraine: fracturing an arm, having half my thumb severed by glass, cracking my hip bone, having three consecutive concussions, 15 sinus infections and 6 ear infections in one year, being attacked by a nest of yellow jackets and stung all over, and the list goes on.
For about 4 out of 5 migraines, I come out of it thinking, "it's a good thing I was unable to see or stand or move, because if I had been able to, I would've rather killed myself than go through that again." (note, I do not actually wish to die, or wish harm on myself, I’m just expressing the emotional drain that happens with this level of pain) No matter how I try to describe how awful my migraines are, it's impossible to describe how bad those 12 hours are.
When I finally get my vision back, my head pain dies down to a headache level that most people probably imagine migraines to be, a 9/10 pain level. Sound still hurts. Light is pain. Smells make me sick. And my head aches.
Then, there's the week to month long migraine after-effects. Depression (not sadness or a low mood - I mean full on chemical depression), exhaustion, low energy, drowsiness, brain fog to the point that I can't complete usually-simple tasks for work or school, light and sound physically hurt my head and make me feel sick, and a week long headache.
Having migraines for nearly 20 years, I’ve done plenty of research on how to stop them (way more than any of the opinionated spectators, that’s for sure). I promise, you don’t know about a potential “migraine cure” that I haven’t already researched or tried myself. When I say I’m in pain, I’m asking for empathy and understanding, not your uneducated and often offensive opinion on my pain. This goes for migraines and all other invisible illnesses. When someone with a chronic, invisible illness expresses a painful experience, the best thing to do is respond with empathy, not advice.
Migraines are one of the most common debilitating medical conditions, but they still aren’t fully understood. Migraines WITHOUT aura have several prescription medications available to lower the frequency of attacks, but nothing to stop them completely. For people who have migraines WITH aura, some existing medicines can lower frequency of migraines, but most don’t work and some even make the experience worse.
The American Migraine Foundation says this:
“Migraine is the third most prevalent and sixth most disabling medical illness in the world; in the U.S. alone, over 37 million [people] live with the burden of unpredictable episodes, and the stress of not knowing when a [debilitating] migraine attack will hit. Yet despite the severity and pervasiveness of migraine, this invisible disease is widely misunderstood.”
The medical industry is failing people with migraines.
Our widespread public misunderstanding of the severity of migraines, and the accompanying lack of empathy toward those who suffer, is hurting people we care about.
Just because we can’t SEE someone’s pain or suffering, doesn’t mean it isn’t there.
Next time someone expresses mental or physical pain or suffering, even if they look healthy to you on the outside, try offering empathy instead of advice or criticism. Invisible illness is bad enough on its own, without your friends and family doubting your pain.