To briefly explain, Ehlers Danlos Syndrome (EDS) is a connective tissue disorder which is characterised by chronic wide spread pain, easy dislocations, chronic fatigue as well as many other complications with different organs and autonomic dysfunction.
Before I was diagnosed with Ehlers Danlos Syndrome at 18, I had numerous different reasons and explanations thrown at me to attempt to make sense of what I was going through.
When I finally did get my diagnosis, I had even more reasons and explanations and advice thrown at me from all directions, however looking back on the past 4 years, I have to say that the most ridiculous things that have been said to me have been said by doctors, specialists and other medical professionals.
Here are 5 of them.
1. “Your symptoms are impossible”
A doctor actually once told me that it was impossible that my body had started rejecting or not digesting meat, which is odd because the doctor I saw after that seemed to think it was actually predictable behaviour considering I have an unknown issue with my intestines/bowel.
2. “Have you tried googling it?”
This actually happened. I went to the doctor with pain in my knee and constant minor dislocating when I was walking, my doctor asked me to Google it. Bonus point for being told to do ti-chi to strengthen my knee, to which I asked whether I should be doing the ti-chi before, during, or after the dislocation.
3. “I’m not concerned because you’re obese”
I lost around 21lbs while on a diet which was great because I was overweight due to emotionally eating. However, I continued to lose weight rapidly due to not being able to keep any food down or in my system very long at all. I told the doctor I was concerned as I hadn’t been able to eat and was in excruciating pain and he told me I was obese so it was okay.
4. “You’re just a little bendy it’s nothing to worry about”
I got told this on the day I was diagnosed. It took all of my strength not to slap the nurse who had just invalidated years of excruciating pain. 4 years on, I never ever expected to be in this kind of pain so young, I wish more than anything that I was ‘just a bit bendy’.
5. “Are you sure that your pain isn’t manifested from your depression?”
This was said to me after about 6 months of going back and forth to the doctors with back pain and joint pain. I actually started doubting myself at one point, and sometimes I still do doubt myself, until of course the excruciating pain from a dislocation kicks in, then I’m 100% certain I haven’t made it up.
Ehlers Danlos Syndrome is complicated, because like many other illnesses it is invisible and unlike some illnesses it actually isn’t very well understood. Many of my doctors and even some specialists I’ve visited don’t know how to even spell it let alone understand the great complications it can bring.
All I can say is that I’ve faced many appointments with ignorant doctors and doctors who mean no malice, but just don’t understand. I am always right about my own body, and I’m glad that the numerous severely lacking explanations or underhand digs haven’t taken my confidence in my own gut feeling away. Trust your instincts, take your meds, don’t let doctors be mean to you.
Words by Lauren Elise James