Being told you’re fine doesn’t mean much when you haven’t slept in days. Or weeks. Or years. Especially when the pain only shows up at night, when no one else is around to see it, and there’s nothing to distract you from it.
That’s the nightmare she’s been dealing with. Every time she lies down, the pain starts, sleep disappears, and her life slowly shrinks around it.
Doctors kept brushing her off because she was young and looked normal, and by the time anyone took her seriously, she’d already lost her job, her routine, and most of the people around her.
Her scary story begs the question: What would you do if you were encountering bizarre and painful medical symptoms, but doctors dismissed or even gaslit you over it?
For three long years, this 26-year-old woman has been suffering from mysterious medical issues. Every time she lies her head down on her bed to go to sleep at night, she has terrible pain in the back of her head and her neck that forces her to stay awake for hours on end.
Since she can’t get comfortable, she wriggles and squirms, and suddenly, it’s twilight outside. It doesn’t matter if she’s exhausted; the pain prevents her from going to sleep.
It also does not make a difference if she’s stressed out or relaxed; nothing helps her, not even medication. Additionally, the nerves running through her back and legs feel like they’re on fire when she lies down, too.
When she first started experiencing her symptoms, she could manage to fall asleep by 2 or 3 a.m., but then it turned into she was lucky if she fell asleep by 7 or 8 a.m., which impacted her ability to get up on time and function at work.
The very first doctor she went to was her primary care provider, and he laughed in her face and told her that only elderly people suffer from those symptoms. He did a routine blood test on her and reassured her she was fine, but that didn’t clear up her problems.
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“I ended up going to another doctor, who was great at first, but then her mother worked the front desk, and every time I’d go in, I’d get told I ‘don’t look sick’ by her,” she explained.
“That same doctor also ended up making it difficult to get my ADHD meds, which, coincidentally, also help with my pain. She did put me through physical therapy, which didn’t help.”
“Eventually, I lost my job due to this. Then I’d have to cancel plans with my friends because I would have to catch up on sleep during the day. I’d explain the situation and get told I should see a chiropractor, that maybe it was ‘all in my head and I’m not actually sick.'”
She then quit going to doctors, as they didn’t believe her. She gave up on caring for herself or hanging out with her friends. Her family turned on her and echoed what the doctors said; she was fine, so they accused her of being lazy.
She would spend days in a row in her bed, doing her best to make herself comfy. She told herself perhaps everybody was right, and she was making everything up. Maybe it was all inside her head and leaking into the real world.
But as she grew sicker, she finally woke up and acknowledged that she could no longer keep pretending she was making it up, because she wasn’t.
The doctor she’s seeing now finally referred her last year for an MRI of her neck, and nothing looked outside of the ordinary. She was prescribed a slew of sleep and anxiety medications, along with very strong ibuprofen.
Within the year, all that did was make her more tired; it didn’t help. So she went back and got a second MRI. Her neck looked alright, but it seemed she potentially had a cyst sitting in the back portion of her brain.
Her doctor looked at the results and once more said she was normal. She asked her doctor to read the report again, and her doctor pushed back and accused her of not understanding her job.
She didn’t back down and addressed the cyst, so her doctor looked the report over once more, and then finally referred her to a neurosurgeon.
She booked an appointment with the neurosurgeon, who didn’t even bother seeing her. Instead, he sent his nurse practitioner into her room with printed out copies of her two MRIs. This woman insisted she appeared to be fine, but she had researched what that cyst could be in her free time.
She brought up the cyst, and then the neurosurgeon told her that he could get an MRI done of her brain this time, but there was nothing they could do about the cyst.
“Now I know for a fact that is NOT true. Typically with these cysts, they are asymptomatic. But if they are symptomatic, which mine definitely [is], they pose the same issues that I’ve been having. The only way to treat it is to remove it, but the surgery has helped a lot of people,” she added.
“I’m not reading mom blogs online. I’ve been obsessively combing scientific, peer-reviewed journals for my information. I’m doing more homework than these doctors probably have ever had to do in their years of med school, and I’m getting brushed aside by EVERYONE.”
“Lo and behold, the recent MRI confirmed the cyst, and I found out I’m in the early stages of a progressive disease. I’m basically in the early stages of dementia.”
Her official diagnosis? An arachnoid cyst and chronic small vessel ischemic disease, but the cyst itself is not causing the dementia.
And her symptoms are those of a symptomatic cyst, given all of the pain she experiences while trying to go to sleep at night. She is so very bitter about having to literally fight to get doctors to take her seriously.
She was not making any of this up. She was telling the truth, so how did so many medical professionals dismiss her and accuse her of manufacturing drama?
“I’ve lost everything to this. Everything. My credibility, my job, my friends, my sanity. I spent two years alone and manic because no one believed me. All because my doctors wouldn’t do their research or read the fine print,” she continued.
“Disgusting excuse for a medical system. Disgusting.”
This is so sad to me, and it’s a reminder that sometimes, we are put in situations where we have to fight to get doctors to understand that we’re in pain, and not making it up.
I hear about stories similar to hers all too often, many from women, and this is the kind of stuff that makes you hope that ChatGPT can one day replace doctors. Sorry, I said it.
What do you think about her story?
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By Bre Avery Zacharski
Hi, I'm Bre, Chip Chick's CEO! I have a degree in Textile/Surface Design from The Fashion Institute of Technology, and... More about Bre Avery Zacharski
