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Why It's Taken Me 30 Years to Stop Feeling Like a Hypochondriac

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As I entered my teenage years, I started to experience the symptoms of what I now know as Ehlers-Danlos syndrome (EDS). It’s taken me over 30 years to discover that. That was 30 long years of not being believed and simply labeled a hypochondriac. Like many people with EDS, things start with many seemingly unrelated issues: headaches, muscular pain, joint pain, stretch marks, TMJ issues and digestive problems.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Over the years, doctors would look at each individual symptom and prescribe a solution for that one problem – never looking at the history and joining the dots. But with this onslaught of symptoms, I became quite anxious. I would worry more about things – was I OK, what did this mean, was I sick? My family soon labeled me a hypochondriac. It became a bit of a family joke. Whenever I mentioned something, it would be laughed off as just another imagined symptom. The problem is you soon start to believe that yourself. You accept the label. If it’s said to you often enough, it can become your reality. This is exactly what happened to me.

As I grew into adulthood and motherhood, I just assumed I was a hypochondriac and therefore my signs and symptoms were not of value. It was clearly all in my head. I was the weak one and my family and doctors were right. I felt weak and like I did not even understand myself anymore. How could I feel this ill, this tired, but it was all created in my head? So I tried to ignore what my body was telling me, I ignored the warning signs that all was really not well. I pushed too hard as I was desperate to rid myself of this label. Maybe if I could do as much as everyone else, I would feel “normal.” But what is “normal” anyway? The result eventually cumulated in a two-week hospitalization for pneumonia – ignoring signs of a body pushed to its limits.

The dictionary definition of a hypochondriac is “a person who is abnormally anxious about their health.” Or “a person who overly worries about their health without having any reason to do so.” These are clearly not useful messages to give to someone with EDS and yet this is sadly not an uncommon story. We battle to be listened to and be heard. Our stories need to be expressed. Be strong in your convictions. It’s important we don’t allow others to label us or make us feel in the wrong. Being labelled this way caused me many years of distress and disempowerment. That is something I hope we can change for others.  It may take time, it may be frustrating but we can find our strength.  Support from family, friends and the medical profession is so important when living with a chronic illness. And despite hearing of stories like this, there are people out there who do understand, who have heard of EDS and who won’t label you as a hypochondriac. It may take time to seek out those people, but my message is don’t give up. You are not alone. I sought out support, I researched. I read, I spoke to people and I finally got my diagnosis. From personal experience, once that label has gone it is like a weight has been lifted off your shoulders. You are believed, the symptoms are real and validated. There is always a light to be found and a way forward.

Originally published: August 18, 2018
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