Why People With Invisible Illnesses Fear the Emergency Room

As unpredictable as my illnesses can be, there is one pattern I consistently follow. It repeats about every three months.

The first thing I notice is a sharp uptick in my pain levels. My joints hurt more. I ache to my very core. My neck has sharp, shooting pains. The fibromyalgia flare is here. The fibro kicks the Ehlers-Danlos syndrome pain into high gear.

Then there’s that little tingle. It starts at the top of my jaw and creeps its way down my left cheekbone. I know I’m in trouble then.

Soon the hemiplegic migraine hits. As someone with classic, chronic and hemiplegic migraines, along with migraine with aura, I have experienced all that a migraine can throw at me. By far, the hemiplegic ones are the worst. I get the “stroke” face, where my left eye and smile droop. I start to lose control over my muscles and have weakness in my limbs. I can’t think for the life of me, I can’t concentrate and I can’t form coherent sentences or spell or speak.

Once the hemiplegic migraine beast rears its head, there’s no turning back. If I’m lucky, I’ll wake up tomorrow and it will be gone. Usually, I’m not lucky, though.

Every three months (or sometimes only one or two), I end up with a hemiplegic migraine that goes on for days and days. I’m stuck in the dark (both literally and metaphorically). Sounds and light are overwhelming. Out comes the walker, which I usually stubbornly refuse to use until I absolutely have to.  

By day three, I’m headed to the ER. Of course, the migraine doesn’t break with their cocktail, so they admit me. I spend the next two to four days in the hospital, waiting for my migraine to break.  

It happens every three months like clockwork. Within my circle, we call it the trifecta. It’s always a combination of Botox wearing off, hormones and one other variable. This time it’s the weather. All of the storms have sent me spiraling.

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Sooner or later, my stomach will stop digesting food. It’s not like I’m hungry right now, but food can be important to living (or something like that). Today I haven’t even managed to finish a protein shake. 

As my pain gets higher, my dysautonomia kicks in. I can’t regulate my temperature, my blood pressure or my heart rate. My breathing becomes labored, and my heart rate skyrockets as they try and regulate my pain.

Sometimes I don’t wait the 72 hours. Sometimes I can’t. 

If you are someone with chronic illness or a rare disease, you know how difficult the hospital can be. The emergency room can treat you like a drug seeker. They can minimize your pain and may even call for a psych evaluation.  

I’ve been in the ER so often over the last two and a half years that I’ve gotten to know some of the staff and most of the doctors.

I’m lucky I have doctors who treat my migraines seriously. I’m lucky I have a team of university doctors who swoop in over the local hospital staff and call rank. I always receive excellent medical care, and so I’ve never had a problem going to the ER when I’m like this. I usually hold out as long as I can. Last time I made it two and a half weeks. This time I don’t know if I will make it through tonight.  

I’m hoping I wake up better tomorrow. I’m hoping that this isn’t the start of another down season. But I do have that trifecta going on, so the odds are not in my favor.  

No one likes having to go the emergency room, especially spoonies. But when the time comes, and it’s different for all of us, I go. I go because I know I will feel better afterward. I go because I can’t deal with the pain anymore.  

So many spoonies fear the emergency room because they’re afraid of how they will be treated, so they choose to stay at home — sometimes in agonizing pain. Maybe they’ve already tried going to their local ER several times and always had bad experiences. For those of you out there that this applies to — I’m sorry.

Just because we have invisible illnesses doesn’t make us fakers, liars, drug seekers or psych cases. I see you, my fellow spoonies, and I see that your pain is real. I see that your illness is real. I see that you have searched for help and are being turned away at every door you knock on.

It seems to me that the medical community is lacking in their knowledge of rare and invisible diseases. They seem to lack bedside manner for the chronically ill. ER docs are quick and dirty. Get them in and get them out. They want horses, but we’re zebra unicorns. They don’t want to hear about our medical history or what’s going on. They want to know what hurts, how long it’s been hurting and “What brings you in today?” 

Zebra unicorns aren’t that simple. They don’t want to spend the time to get to know our histories and us. They just want to fix us and send us on our way.

But what if we aren’t a quick fix? What if it’s not a cast on a broken arm or an emergency appendectomy? 

The best advice I have for you is to be your own advocate. If someone is treating you unfairly in the hospital, ask to speak to the charge nurse or the patient advocate. Demand quality medical care. Everyone has a right to it, and if you’re having issues with the staff, there are specific people at the hospital just to help resolve conflicts.  

The best thing that has happened to me is centralized care — all of my records are in one place. Before I got into centralized care, I was lugging around all of my medical information with me. By this point, I retain it all in my brain and can repeat it back like a worn-out cassette. With centralized care, though, all of your records are in one chart where all of the doctors at that facility can look at them.  

I know the struggle. I know how hard it is. I know that we never, ever want to go to the emergency room.  

But sometimes we have to, and we should be treated with dignity and respect when we do. I like to take someone with me who can advocate for me, like my partner or my mom.  

Each of us has different thresholds for what we can tolerate and what sends us over the edge. But fear keeps us from getting the necessary medical care we need when we are over the edge. With so many bad experiences out there, how could we not be afraid?  

So to you, my fellow warriors, I say this: Be your own advocate. Respectfully ensure that your rights are not infringed upon. Try to stay calm because getting emotional only makes it worse.

And to the medical community, I say this: Nine times out of 10 it is a horse. But there are those of us, the one in 10, that float through the clouds as zebra unicorns. Broaden the lens that you look at your patients with and don’t dismiss the chronically ill’s attempts to see help. It took a lot of courage for that spoonie to go to the hospital today. It wasn’t their first choice. They waited it out as long as they could, took every medication in their arsenal and are now here, in your emergency room, because nothing has helped. See us for who we are — striped, colorful and beautiful.