23 Consequences Of Misdiagnoses People With EDS Had to Deal With
”You are clearly depressed! Here is a prescription that will make you feel better.”
”It’s just low blood pressure. Most women your age have this. Just go out and do more sports.”
”You are too stressed. You need to relax. Do some Yoga or meditate and you will be fine.”
”You feel like your joints are unstable? You are too young for this kind of problem.”
These are all quotes I heard when I first showed neurological symptoms related to Ehlers-Danlos syndrome (EDS). I can hardly count all the misdiagnoses I received while still searching for the true cause of my symptoms. When I asked other people living with EDS about their experience, the stories they shared were sometimes even more tragic than mine.
Misdiagnoses are a common problem for people all around the world, but it is even more usual for a person living with Ehlers-Danlos syndrome. A study of 414 EDS patients from around the world found that a misdiagnosis was given to 56 percent of patients, and misdiagnosis was associated with a longer time to reach the correct EDS diagnosis — eight years without a misdiagnosis, 19 years with a somatic misdiagnosis and 22 years with a psychiatric misdiagnosis. The consequences can be severe; for example, physical or mental harm arising from inappropriate treatments as a result of the misdiagnosis.
The Mighty wanted to hear what our community had to say about consequences they dealt with because they were misdiagnosed before receiving their EDS diagnosis.
And this is what our community shared with us:
- ”[I didn’t know] that local anesthetic doesn’t react the same, and dealing with horrific dental work feeling everything.” – Kristie W.
- ”I needed knee surgery at age 17 because they didn’t believe my joints could just ’slip out like that’” – Dayanara J.
- ”A huge consequence for me was that I was labeled as having no reason for being in pain so it must be in my head. I was labeled with chronic pain syndrome and told to push through. This led to further injury from physical therapy exercises that would have been contraindicated for someone with Ehlers-Danlos. For me and many others, this led to a lot of self-conscious and depressed feelings when it came to my diagnosis.” – Peyton K.
- ”Given the wrong medication and then going through the withdrawal after being on it for such a long period of time.” – Cristina M.
- ”Joints, ligaments, and tendons that are so damaged from years of being ignored by doctors that I’m 29 and in constant agony.” – Jennah M.
- ”Internalizing the idea that my symptoms were ’all in my head.’ Even with my diagnosis, I still deal with a lot of self-doubts.” – Courtney J.
- ”I was told it was all depression and anxiety and forced to have 13 sessions of electroconvulsive therapy. I can’t remember about six months of my two boys’ lives.” – Lidia M.
- ”Having my doctor put ’possible drug seeker’ on my medical file because she didn’t believe the amount of pain I was in because she couldn’t see it.” – Laurie C.
- ”Having social services called on me due to all the breaks, bruises, and illness. I remember having a massive break down over it when they accused my parents of stuff.” – Jade W.
- ”I was careless with my body. I pushed myself for months at a time; I would walk on sprains and subluxated joints; I was unaware that I needed to strengthen those joints, and so much more. It took a huge toll on me.” – Mikki I.
- ”I was rushed in my physical therapy and given an exercise that resulted in a rib dislocation.” – Jaymie H.
- ”Doctors wouldn’t listen to me because they all thought I was a hypochondriac whenever I mentioned that I might have EDS.” – Michelle K.
- ”My injuries as a kid never healed properly because they were ’just sprains’ and I ’didn’t need the braces.’ I was told to ’suck it up’ or ’walk it off’ despite having twisted something or popped a joint funny.” – Celaena W.
- ”’Stop being lazy.’ Every day. All day. Only when I got a diagnosis did people consider the fact that maybe I actually knew my own limits.” – Saorla D.
- ”My doctor was always quick to decide everything was either no big deal or psych related. So when my brain scan came back showing partial empty sella syndrome, he ignored it and said I was fine. I am not fine. My pressure on my brain is so great that my brain was getting squished for two years before I figured it out and fought for a diagnosis. I now have secondary adrenal insufficiency. I could have died.” – Stephanie N.
- ”Twenty-six years of needless extreme fatigue, brain fog, unexplained injuries, isolation, disability, and poverty. Undiagnosed and untreated cerebrospinal fluid (CSF) leak, postural orthostatic tachycardia syndrome (POTS), and mitral valve prolapse (all of which are on the radar and more realist recognized once you have an EDS diagnosis).” – Jade B.
- ”Loss of 10 years of life. Loss of school. Loss of job.” – Paula R.
- ”Strained relationships at work, home, and school. I was constantly told how I’m a hypochondriac, looking for attention, or trying to get out of doing work. Until I knew what was actually wrong, it was really frustrating because I didn’t have answers for when they asked how someone my age had so much mysterious joint pain.” – Amber R.
- ”Having ’Munchausen’s’ added to my medical files by a doctor without a psychiatric consult because of my pain and gastrointestinal complications.” – Bri N.
- ”I was constantly made fun of at school because I was always injured — not just by the students either. When I was on crutches after breaking my ankle from rolling it over a speed bump (an injury which the school initially refused to believe), I fell down the stairs due to what I now know to have been a wrist subluxation. The student welfare teacher told my mum not to bring me back to school until I was off the crutches because ’giving that girl crutches is like giving her a weapon,’ never mind the fact this meant I missed three weeks of school.” – Skyler K.
- ”Medical trauma. I still don’t trust doctors.” – Erika D.
- ”I was paralyzed temporarily from the neck down the first time and from the waist down the second time. I missed more than half of high school. I had to learn how to walk again twice. I missed my junior prom and my junior and senior trips. I graduated high school on crutches because I had torn ligaments from my hip constantly popping in and out. The list goes on, and honestly, the disappointment and the sadness never seems to end because I constantly miss out on my life due to this illness.” – Unity M.
- ”I missed 75 percent of high school.” – Emily S.
While being misdiagnosed is part of our reality, it is something that taught me so many things at the same time. I learned to listen to my body, to advocate for myself, to stand up in front of medical professionals, and certainly, it showed me how to be persistent. Receiving a diagnosis was the hardest part for me. I just wanted to let you know that it gets easier. There are incredibly good and understanding doctors out there and the EDS community is not as small as it may seem. We all have been through similar ordeals, and if we keep telling our stories, we will be heard!
I feel like the most efficient way to reduce possible misdiagnoses for future people seeking a diagnosis of EDS is to spread the word about Ehlers-Danlos syndrome, and there are many organizations worldwide working hard to improve our quality of life.
The following are just a few examples of the amazing support system we have. Check these out if you need resources and help with your EDS diagnosis:
Getty image by Victor_Tongdee