It took me 10 years of doctors' appointments and a misdiagnosis of IBS before discovering I had Crohn's disease
- When I started experiencing fatigue, bleeding, and stomach pain, doctors mistakenly said it was IBS.
- I went to countless appointments over 10 years before getting a diagnosis for Crohn's disease.
The unpredictable nature of autoimmune conditions and inflammatory diseases, combined with nonspecific symptoms such as fatigue and pain, means the road to diagnosis for people with chronic illnesses can be long. For me, it was over 10 years.
When I first went to the doctor with exhaustion, diarrhea, bleeding, and stomach pain, I was working full time as a preschool assistant. While the other symptoms were horribly debilitating, I was most concerned about the fatigue. Being alert was a must for the safety of the children in my care, yet all I wanted to do was sleep.
I'd get home from work and doze on the couch, often sleeping all evening until giving up and climbing into bed. The doctor told me I was suffering from irritable bowel syndrome. The medication they prescribed didn't help, and only added nausea to my list of symptoms. Things weren't improving.
I made countless appointments but left without answers
I was starting to feel hopeless. I made dozens of appointments, had countless blood tests, but no answers or solutions were forthcoming. I dreaded going back to the surgery center, knowing they'd say the same as they always said — that my symptoms were classic for IBS and not to underestimate how unpleasant the condition could be. Once, I overheard a doctor telling another that I was a hypochondriac.
As someone who has always struggled with low confidence, finding the energy to self-advocate was draining. For a while I went with a "put up and shut up" attitude because I didn't have the energy to fight.
My limbs ached, I struggled with brain fog, and the physical exhaustion was overwhelming. I couldn't eat or drink because the pain was unbearable. During times I felt well, I wondered if I'd imagined it all.
I would doubt the validity of my condition because when you feel well, it can be hard to recall the precise agony of the worst days. Then the symptoms would come back, affecting my ability to function and causing my mental health to plummet.
Leaving the house was a challenge and I started having panic attacks, making my chest tighten so much I thought I was dying. I'd struggled with anxiety in the past, so I recognized the feelings and was prescribed antidepressants to help me cope. But still, I was falling apart.
I began to feel like a burden at work because I was regularly too ill to come in or would need time off for medical appointments. Eventually, I became so unwell I left my job.
I found a glimmer of hope with a new general practitioner
Fortunately, around this time a new general practitioner started at my local surgery center. They listened to me, reran all the tests I'd had previously, and more. When they promised to get to the root of the issue, I believed them. Finally, I had an ally. More than that, I had hope.
New test results came back suggesting there was inflammation in my body. A simple stool test for calprotectin, which no doctor had previously ordered, was high, and combined with my symptoms, meant I met the criteria for a colonoscopy.
Ten years of pain, guilt, and battling to be taken seriously came to a head as I lay on a hospital trolley, drowsy with nitrous oxide and oxygen, watching a camera pass through my blistered large bowel. I hadn't been suffering from an overactive imagination. I'd been suffering from Crohn's disease.
A diagnosis of Crohn's brought some relief — but it also brought anger
I thought diagnosis would be its own form of closure; finally, I could use the energy I'd been channeling into self-care and getting better. Alongside the relief, though, was a deep anger that the process had taken so long.
If there's one thing more miserable than being ill, it's being ill and not knowing why. Once we know what we're dealing with, medication can be prescribed. Treatment and healing can begin. The more time it takes to figure out a treatment plan that works, the harder it can be on a person. People with chronic illness or pain are more likely to suffer with mental-health problems compared to the general population, and considering the battle it took me to get a diagnosis, it's easy to see why.
The skills needed to self-advocate don't come easily, especially to introverts. Tips I picked up from friends — such as making notes before an appointment or taking someone with you to consultations — can help, but nothing helped me as much as finding a healthcare professional who was an ally in the truest sense of the word.
We need all healthcare professionals to listen to us the way that provider listened to me — people who will take it upon themselves to find answers to their patients' questions and leave no stone unturned. We need healthcare professionals who see it as their job to provide patients with hope.
For anyone who feels their health concerns are not being taken seriously — know that you're not alone. I see you, I hear you, and I am sending you love and strength. Most of all, I wish you didn't have to fight so hard.
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