Doctor and nurse examine xrays to diagnose patient.

Why Does Diagnosis Take So Long for Those with Chronic Illness?

One of the biggest sources of frustration for spoonies is the length of time and the difficulty that they can encounter on the journey to getting a proper diagnosis and treatment. But why does that happen – and what can be done about it?

Brain scans used for diagnosis from a patient with a chronic illness or disability.

A Personal Story

I remember the first time I started having strange and unexplainable health problems. 

I was fifteen years old. I was walking through my parents’ house one night to get a drink from the kitchen when I suddenly fell to the floor, unable to feel my legs. 

I was rushed to the hospital – my first trip in an ambulance – and was eventually admitted as an inpatient. After weeks of painful, frightening tests, learning to use a wheelchair, and trips to other cities to visit large pediatric hospitals, my parents and I still had no answers.

We would never receive them.

Whatever was happening to me at that time eventually resolved on its own. There were plenty of theories; my pediatrician at the time thought that it might have been a strange and little-known virus that caused neurological symptoms. 

The neurologist at the small hospital where I was admitted confessed that he really didn’t know what was wrong. And the pediatrician at that large children’s hospital? He told my parents that he thought I was faking it.

This story is unfortunately a familiar one to many people who are chronically ill or disabled. Being dismissed, laughed off, or told that there simply is no answer to our healthcare questions is a frustrating thing to experience, but it definitely happens. 

Thankfully, most of us do eventually get a doctor or medical team who take us seriously, perform the tests that are needed to help us, and give us a diagnosis that will help us get the treatment we need. But too often, the path to diagnosis is a long and exhausting one.

Why is that? Why are so many spoonies putting up with this kind of distress and disillusionment in the modern healthcare system? There are various factors at play, but some of the most important involve medical conditions that are difficult and often expensive to diagnose and healthcare providers who are dismissive of patients’ complaints about pain and other “invisible” symptoms of these conditions.

Man setting a patient up for a diagnostic test for a chronic illness or disability.

Tests, Tests, and More Tests – If You Can Afford Them

It’s no secret that the American healthcare system can be difficult to navigate – and expensive. It can take many doctors, many tests, and many years to get an accurate diagnosis, and that’s only if you have the insurance coverage and/or cash to afford all of it. 

It’s no wonder so many people who are disabled or chronically ill end up giving up on getting an accurate diagnosis or the treatment that they need.

I am going to use my own journey as an example. I have been diagnosed with fibromyalgia and sciatica since 2015. When I started having new and extreme pain in my head and face in 2017, I was originally given migraine medication by my primary care provider. It didn’t help me at all, but I was told to wait at least three months to give it time to take effect. After those three months I was feeling worse than before, so I returned to my doctor.

This time, she put me on a different migraine medicine. It helped for a little while, but only because it literally knocked me out every time I took it. 

After another six months, I returned to the doctor, begging her to run some kind of tests to figure out what was wrong, because this medication was making it difficult for me to function. At this point – in 2018 – I was told I would have to be referred to a neurologist. However, since I was a new patient for this provider, it would take five months for me to get an appointment.

By the time I saw my local neurologist for the first time, it was 2019. He diagnosed me right away with trigeminal neuralgia, and I was so relieved that I cried right there in his office. I finally had a diagnosis! He prescribed me medication and I headed straight to the pharmacy – only to be told that my insurance wouldn’t cover my medication, and that the monthly cost would be in excess of $300.

It took nearly two months for me to convince my insurance provider to cover my medication. Once they finally did, I took it as directed – and it didn’t help. 

I was so frustrated when I returned to my doctor eight weeks later. This time, he told me that anything further was out of his hands, and he referred me to a neurologist nearly three hours away. That appointment was another two months away.

When I got to that appointment, I saw three neurologists in one day. I don’t even remember what they told me. All I remember is that I was told I would have to see a neurosurgeon there in the same hospital. He wasn’t in the office that day, though, so I would have to come back the following week – another three hour drive.

When I saw the neurosurgeon, he told me that my condition was curable through surgery, and he wanted me to have that procedure – open-skull brain surgery, mind you – the following week. I was desperate and felt like I had no other options, so despite my anxiety, I agreed.

I had that surgery and came through just fine. 

It happened on April 1st of 2020, at the height of the initial lockdowns of the pandemic. As such, no one was allowed to even come to the hospital with me, let alone stay overnight. I went through brain surgery entirely alone, and was released out the front door of the hospital two days later in a wheelchair to my very anxious husband.

The recovery from that surgery was tough. The fact that I was cured of that pain was worth it, though – and for about three months, it was true. My life was finally going to get better!

However, shortly after I was entirely healed from my surgery, my pain slowly started to come back. Disappointed and frustrated, I elected just to deal with the pain. After all, I wasn’t in any hurry to go through surgery again. 

Unfortunately, within a few more months, I started having numbness and weakness in my hands and feet, spasticity in the muscles of my entire body, and episodes of stroke-like symptoms.

Frustrated and exhausted, I returned to my surgeon in late 2020.

This time, he decided to conduct some further testing. He theorized that I may have multiple sclerosis, but told me that he wasn’t comfortable treating me for the condition. He referred me to another specialist at the same hospital – there was no one in my area available to help me – and I went home with an appointment a few weeks later to see this new doctor.

It is now May 2021. I have seen that doctor or his nurse three times. They still think that I may have MS, but they think I may have other neurological conditions as well, since my tests have been rather inconclusive. 

So, I am scheduled to see an entirely new neurologist later this month. As of right this minute, I still have diagnoses for fibromyalgia, arthritis, sciatica, and trigeminal neuralgia, but presumably a long way to go before I have an accurate and proper diagnosis for whatever else is wrong.

It is maddening! 

I can say that from personal experience – and it’s something other spoonies tell me all the time. The problem is that the tests that are required for many of the conditions that I am suspected of having are complicated, not standard in typical blood test panels, or are not covered by insurance. 

Some also require a waiting period between tests or are only covered once per year. It all makes for a long and disheartening journey to the truth and treatment.

Dismissive Doctors & Nonplussed Nurses

I won’t address this particular issue extensively, because it’s really one that requires its own lengthy, in-depth post. However, it is worth mentioning that the other half of the uphill battle to accurate diagnosis that many spoonies face involves medical professionals who simply do not take us seriously.

This isn’t to say that all medical providers are dismissive. Enough are that it causes serious problems, though, and it leads to situations like – and much worse than – mine. 

And it’s really a two-part problem.

First, the opioid epidemic and the resulting crackdown on the availability of prescription pain medication in the United States has led to many doctors outright ignoring patient complaints of pain. 

I live in Appalachia, and this is a serious issue here. There is such a high instance of drug use here that I have repeatedly been told to my face that I won’t receive any help for my pain and that I am better off treating it with ibuprofen. 

If you have the kind of pain that chronic illness often causes, you already know how effective that would be.

Second, there is the dismissal of “invisible” symptoms. When I told my providers that I was experiencing weakness, numbness, and dizziness, I was essentially told that there was no way for them to observe and verify that and that they could do nothing to help me. 

I would have to undergo expensive testing that would take weeks or months to schedule, and see specialists at hospitals hours away.

Please understand, I am not saying that people should necessarily have easy access to pain medication. I am also not saying that doctors are not right about some symptoms being difficult to diagnose or treat, or that people never fake these symptoms in search of medication or even attention. 

What I am saying is that real people deal with real pain, real medical problems, and real suffering that is not necessary – especially for the months or even years that they typically have to endure them just to be taken seriously.

What is your experience? How long did your diagnosis take? Are you still in the process of seeking diagnosis and treatment? 

Whatever your experience, know that you are not alone – and the community that surrounds you is a great source of support and information along the way.

Leave a Reply

Your email address will not be published. Required fields are marked *