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How growing up undiagnosed affected my life

Madelyn’s story of chronic illness, dismissal, and the journey to their diagnoses.

The first time I twisted my ankle was in my kindergarten gym class. I remember telling my teacher and then being made the designated ball picker-upper for the rest of class. It was a seemingly innocuous childhood injury, but then it happened again. And again. Unbeknownst to me, or my family, this was my first symptom of a genetic connective tissue disease known as hypermobile Ehlers-Danlos Syndrome (hEDS).

Madelyn at 11 years old, when her POTS symptoms started

When I was diagnosed with hEDS the month before my 18th birthday, all of the odd and seemingly unrelated issues I had had all my life suddenly fit together like a puzzle; the chronic pain, the digestive issues, the treatments that didn’t work. But, unfortunately, that 17 year delay in a diagnosis caused a lot of issues in my physical, social, and mental health. While I have dealt with EDS related issues my entire life, everything was really spurred on when I developed POTS (postural orthostatic tachycardia syndrome) at age 11.


My POTS diagnosis came after a year of searching for an answer. For months, I was treated as though anxiety was the culprit for my debilitating nausea, fatigue, and tachycardia. Sure, I was diagnosed with anxiety when I was 8, but, since I knew how anxiety felt, I knew that that wasn’t what was going on with me. When my POTS diagnosis came, they did mention that hypermobility was commonly seen with POTS, and they mentioned that I was hypermobile. But besides that, I was told to exercise, drink water, and eat salt, and was sent on my way.


Even after I got my POTS diagnosis, my school still refused to believe I had POTS and continued to treat me as if I was only dealing with anxiety. I had to bring in my therapist to talk to the school administrators to convince them that POTS was real and that I had it so I could get the accommodations that I needed. Looking back, I wonder if things would have been different if those doctors that diagnosed me with POTS looked into my hypermobility. If I was diagnosed with EDS sooner, maybe I would have got accommodations easier, which would have given me the ability to graduate high school.


I always felt that my body behaved differently than the other kids my age. I would injure myself frequently, but only once was an injury visible on an x-ray. Elastic bandages were my best friend, and you could often find one wrapped around my ankle. I was dealing with chronic pain at age 8, which apparently isn’t common. I sensed that some doctors thought I was exaggerating my injuries because I was a kid. I understand where they were coming from, but I also know that all the running and some of the other exercise I did as a child was probably a contributing factor to the chronic pain that started when I was young and has never gotten better.

In the time since I was diagnosed, I have been able to talk to others with EDS and have learned that, unfortunately, my experience isn’t abnormal. Chronic pain is very often dismissed, especially chronic pain of women and of children. Women are often portrayed as hysterical and neurotic when it comes to their pain. Children are often seen as immature and inept in understanding their own pain. The way these incorrect and, quite frankly, offensive stereotypes are frequently used as fact is dangerous. I have experienced these biases my entire life whenever I’ve talked about my pain and it led to quite a long delay in getting my EDS diagnosis.


As time has passed since I finally got my diagnosis, I tend to reflect on the experiences I’ve had with doctors and how I was treated with and without that diagnosis. The vast difference in how I was treated is saddening, disappointing, and shows the amount of weight that is put on diagnoses and not symptoms.


Getting a diagnosis for anyone is important for them to have an understanding of their body, but far too often, the quality of life and symptom management are overlooked in people without a diagnosis. From chronic pain to fatigue to the mental side of chronic conditions, quality of life can drastically change or diminish due to a lack of recognition and validation of symptoms.


I was lucky to have a pediatrician that prescribed me nausea medication even though we hadn’t, and still haven’t, figured out the cause of that nausea. I was prescribed physical therapy before my EDS diagnosis to strengthen my muscles and hopefully help with joint pain, which it did. But often symptoms aren’t treated unless there is a confirmed diagnosis. Even getting accommodations in school or help from the government almost always requires a diagnosis before that help is given. For those who don’t have the resources to get a diagnosis, these rules are very limiting.


All in all, I’ve been very lucky and privileged with the resources that I’ve had throughout my chronic illness journey, but misconceptions and medical bias, both implicit and explicit, have greatly affected my mental and physical well being over the past 10 years. It’s important that patients are listened to and not just immediately dismissed because of their gender, sexuality, race, ethnicity, or previous diagnoses. Health issues don’t look the same in everyone, so we need to stop ignoring people who don’t fit into the stereotypical mould.


I’ve now had my EDS diagnosis for 3 years now and have made many changes in my life regarding my EDS, POTS, and other diagnoses to help my body stay strong. Along with physical therapy, I now also have a personal trainer I work with to keep all of my muscles strong to support my joints. There are many issues with my body that were probably worsened by things I did when I was without a diagnosis. Symptoms are up and down, but I can say that, thanks to my diagnoses, I’m the most active that I’ve been in over 7 years, and it feels really good.

 

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