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15 Things Adults With Ehlers-Danlos Syndrome Wish Their Parents Had Known

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Few people are familiar with Ehlers-Danlos syndrome (EDS) before knowing someone with the condition, so many people with EDS grew up with parents who didn’t fully understand the cause of their child’s pain and co-morbid conditions. Unfortunately, parents aren’t typically taught about the signs of EDS, so dislocations may be mistaken for “clumsiness,” and chronic pain may be innocently seen as “growing pains,” when nothing could be further from the truth.

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

Please know we don’t mean for this post to be one of blame. These parents did the best they could. Instead we hope that learning from these past experiences, parents today can learn how to best support their child with EDS. To do this, we asked our Mighty EDS community to share what they wish their parents had known about their condition when they were growing up.

Here’s what the community told us: 

1. “Doctors and teachers aren’t always right, and having faith in your child when they say they feel sick or are in pain makes all the difference.”

2. “We didn’t know I had EDS as a kid. We had no idea what was causing my joint pain, stomach problems, and headaches. My parents did the best they could seeking answers, even though doctors never knew what to do with me, and I was often told it was stress or anxiety, especially if I had palpitations or shortness of breath. I honestly think my parents did what they could, since they had never heard of EDS.”

3. “I never shared the pain, the joints popping out, the symptoms, or difficulties I had because I thought it was normal. I thought it’s what everyone experiences. When I was diagnosed as an adult, I cried my heart out questioning how different my childhood and young adulthood could have been had I known I had EDS. It took some time, but I realized I wouldn’t have it any other way because my experiences made me who I am today.”

4. “I wasn’t making it up. I wasn’t trying to get attention. I really was hurting. I really did need help.”

5. “[I wish my parents had known] EDS even existed. Being a military brat overseas can limit your access to doctors that have time and patience to really focus on you. I wish both my parents, as well as myself, would’ve realized it wasn’t normal to be sore and in pain regularly. The doctors told my mom I just needed some ibuprofen and to strengthen my core. Neither of us knew any better, so that’s what we did, and it didn’t help and after so many visits with the same conclusion from the doctor, I stopped even mentioning my pain and discomfort.”

6. “I wish they had known I was clumsy because of EDS and not because I wasn’t being careful.”

7. “My mom always had me show people my ‘tricks,’ not caring if it caused me issues. Showing pain or struggle wasn’t a thing in my family. I wish my mom had looked into EDS instead of finding excuses for it… I just wish my parents would’ve been more concerned of possible health problems.”

8. “Push for better medical investigation. I had an MRI at 14, which found a bulging disc. The hospital just gave up and discharged me. Knowing what we know now, I wish they had fought with them to investigate further.”

9. “When I was little and my mood would suddenly switch to whiny/irritable/etc., I wasn’t trying to be rude or naughty. I was exhausted, in a lot of pain and didn’t know how to explain or express that something was wrong.”

10. “Dislocations weren’t just because I was rambunctious.”

11. “When doctors said nothing was wrong, that didn’t mean I wasn’t [experiencing] valid pain. Our joints move farther than normal joints so for us a ‘normal’ range is actually minimized movement. We can’t be compared to healthy joints.”

12. “Lack of awareness is horrible, and I waited 33 years to be diagnosed. My mom still refers to me ‘playing’ with wheelchairs as a kid when in reality I was just smart enough to see a device that moved me without pain.”

13. “Pills are not always the answer! My mom always said she’d take me to a doctor so they could put me on a pill that would fix everything.”

14. “[I wish they’d known] they also had Ehlers-Danlos syndrome. The things that were happening to me were, in fact, abnormal.”

15. “I wish my mom knew I appreciated everything she has done for me. She always believed in me when no one else did. I wish my mom had known not to lose hope and that one day we would find a doctor who would know exactly what was wrong with me, even though it was a rare disease.”

Originally published: March 13, 2017
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