Ali's Story

Please Believe Your Patient When They Tell You They Have a Rare Disease

Even if you’ve never heard of it before. Especially if you’ve never heard of it before.

Even if you’ve never heard of it before. Especially if you’ve never heard of it before.

I opened my eyes and grabbed my phone to check the time. Another hour had passed and I was still a crumbled mess on the bathroom floor, withering in pain that resembled half heart attack and half stroke. The left side of my body was filling with pressure while muscle weakness plagued the right. I tried to take a breath to prepare myself to roll onto my side, but every inhale sent sharp pain radiating through my chest. I began to rock side to side until I was able roll over. I stayed here for a while, hoping I’d gain enough strength to make it off the floor.

Another hour passed. I could feel my hair getting wet from the puddle of tears growing on the tile floor. I considered calling an ambulance, but remembered the bill that had just come from the last one and settled on waiting until I could get myself into an Uber.

Slowly I began to inch down the hallway towards my room, slipped my emergency hospital bag around my neck, and began the hike up the stairs in my apartment. The left side of my body ached more and more as it crashed into every step while the right struggled to keep up. I knew if I could just get up those stairs I could roll my way out of the apartment, down the hall, out the door of the building, and bribe the driver with a nice tip to help me hobble to the car.

As he pulled up to the hospital, I sat up, relieved I had some feeling back in my right leg. Slowly I made my way down the halls. I got to the emergency room waiting area and saw that it was empty. For a split second I was hopeful that I wouldn’t have to wait long, then I realized it was completely empty. There were no nurses, no patients, no doctors. No one. I walked out and found a security guard. I asked him where the doctors were. He ignored me so I screamed “where the hell are the doctors!” He told me I needed to go to the pediatric unit then went back to his phone. I finally made it down the halls to the pediatric unit only to find empty again. As I was leaving I passed a little glass cubicle thing and sitting inside was a nurse.

He was an old, tall guy, who looked exhausted and acted as if I was inconveniencing him the entire time. I walked inside, sat down in a chair and asked to see a doctor. He sighed and started to take my information down. As I explained what was going on I could tell he was getting irritated. I told him I had been to the Urgent Care center a few times recently because of chest pains and shortness of breath with my hemiplegic migraines. Since I had just been diagnosed with antiphospholipid syndrome two months before, the doctor at Urgent Care was concerned about my risk for a heart attack and blood clots and wanted me to have an EKG to rule those out. He finally stopped and said he had never heard of those diseases and I was too young to be experiencing those symptoms. I said “that’s probably because they’re both rare.” He said “ it’s impossible for one person to have so many rare diseases.” I said “just because they’re rare doesn’t mean they’re not real.” He rolled his eyes and went back to writing them down. Another nurse came in and began taking my vitals. She asked what I was here for and laughed when he told her, claiming I was too young to have those symptoms. As she led me back to a bed, he took out his phone and slumped over on the desk, seeming relieved I was leaving.

As I was changing into a hospital gown I could hear the hospital staff going over my chart. I tried to call someone to come meet me at the hospital, but no one was answering. A doctor and some nurses came in. I handed them some medical records and discharge papers from urgent care centers that I had been to recently for the same thing. The doctor said “so urgent care has exhausted all options and told you to stop coming in, I don’t know what you want us to do that they haven’t already tried.” I told her the urgent care doctor said next time this happened I needed to go to the ER and get an EKG, since they didn’t have the equipment there. The doctor sighed and said she didn’t think it was necessary.

Then the curtain flew open and standing there was that same male nurse, holding his phone. He walked over to the doctor, gave her his phone, and said “look at this, she’s telling the truth, the diagnosis is real.” She started scrolling through as he explained to her what my illnesses were and how they were connected. He said they needed to do an EKG, a blood test, do a chest and head CT, and that he would get started on inserting an IV. Surprisingly, the doctor and the other nurses listened to him. I was shocked. Normally I would be frustrated when someone else is listened to over me, but in this moment I was so grateful to not have to go through this alone.

The other nurse came in while he was inserting my IV and said he would need to step out while she did an EKG. I screamed “No! He’s not going anywhere!” She said “Sorry, but for EKG’s it’s female nurses for female patients.” I told them I didn’t care. He said “Ma’am, it’s okay, really. I don’t need to be here for this.” I told her “look, I’ve had them before. I know what happens. I know I’m gonna be topless.” Then I looked at him and said “Dude, you have my full permission to look at my tits right now.” We ended up compromising. While she did the EKG he stood on the other side of the curtain and talked to me the entire time. Over the next few hours he stayed by my side, leaving only to check up on other things, then returning to my bedside. He did the blood tests and took me to get the CT scans. He sat with me while I screamed in pain from the contrast they used during the scan, and again when I cried as the doctor told me they didn’t know what was going on with me and there was nothing more they could do.

I thanked him for helping me that night. He told me he was sorry they couldn’t do more. I told him it was fine, I was used to it and besides, with his help I had finally gotten the tests I’ve been needing and that I was just relieved that he was there. I went home and tried to sleep, then got up and went to class the next day like nothing ever happened. But halfway through my second class I had another hemiplegic migraine with severe chest pains and was sent back to the Urgent Care center, who sent me to a different ER.

This time I didn’t have a nurse there that believed me. In fact, no one did. They did the EKG, then left me in a bed in the hallway. I had a cluster headache and hit my head on the bar on the bed. I must have been too exhausted after to be able to communicate much and they didn’t check my medical alert bracelet because they gave me a medication I can’t take and my pain hit unbearable levels. I don’t know what time I left, how I got home, or what happened the next day, but I knew I wouldn’t be seeking help from an ER anytime soon. I was tired of people not believing me just because they’ve never heard of my disease and making things worse. I decided I would rather suffer than keep putting myself through that.

If I could go back and tell all of those doctors I’ve seen at Urgent Care or in the Emergency Rooms anything, it would be to believe your patient when they tell you they have a rare disease. Even when you’ve never heard of it. Especially when you’ve never heard of it. Any rare disease patient that ends up in the ER knows there is a slim chance you will be able to help them, so make the experience better for everyone and do what you can. Look up that diagnosis. Order that test. Trust that what they are experiencing is real. It makes that inevitable moment when you tell them there is nothing you can do a lot more bearable.

And if I could talk to that nurse again, I would tell him thank you for believing me. It takes a lot to put your ego and your judgement aside and trust something you know nothing about. It made another bad night just a little bit better.

A version of this story was originally told as part of Breaking The Silence: A Storytelling Night presented by Suffering The Silence.

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