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17 Things People With Ehlers-Danlos Syndrome Wish Their Doctors Knew

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Though people with Ehlers-Danlos syndrome experience a wide array of symptoms and may present the condition in many different ways, most EDS “zebras” have one thing in common: frustrating experiences with doctors who don’t understand how to identify, diagnose or treat EDS. It can take years to get a diagnosis, and even then, doctors may not realize the co-morbid conditions, pain, and emotional effects of the disease.

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

We partnered with the Ehlers-Danlos Society to ask our Facebook communities what they wish doctors knew about EDS. In addition to their hope for doctors to educate themselves on the facts and current research about the condition, EDS patients also revealed the need for patience and compassion — qualities that can help patients feel supported and cared for by their doctors.

Here’s what they said:

1. “The pain is real. Even though you don’t see it, like a knife wound, it is absolutely real and not something that will ‘eventually heal.’ This is a lifelong condition we have to manage on a day-to-day basis.”

2. “Please don’t make a joke about me researching my condition and asking questions. Research is my only choice when half my doctors don’t even know what it is.”

3. “I am open to any suggestions, but I’m not rich. Your out-of-the-box suggestions make me leave your office feeling defeated and sad. I would love to do Bikram yoga, acupuncture, massage therapy, float tanks and twice weekly chiro care, but I cannot afford it. If these are the solutions to my illness without relying on opiates then why can’t or won’t my insurance cover any of them?”

4. “GPs are so used to seeing people when they are ill or on their worst days they forget that some of us are on our better days when they see us. If I am in your office, then I am having a ‘better day;’ you only see me on better days because that is when I can get in to see you. This might mean I’ve rested for the days prior to my appointment so I can get to you. Please take this into consideration.”

5. “Hypermobility is not flexibility: over time, hypermobility can cause stiffness and joint degeneration. EDS3 especially may present far differently in people as they age than it does in pediatric patients.”

6. “A multidisciplinary team needs to be involved in our care, and each member of the team needs to be aware of EDS and the complications that can arise from surgeries if the whole body isn’t taken into account. This is especially so with the internal workings.”

7. “Over my lifetime, I’ve just learned to live with pain and injuries, so when I complain of a problem, I really am impacted by it, even if I’m not yelling or crying over it. High pain tolerance is a necessity for people with EDS.”

8. “The one thing I get time and time again from health care professionals, the ones who do give this condition some credit, is ‘Oh you can’t have EDS, that condition only affects females.’ Now while I completely accept and understand that the vast majority of patients are female, there are many men like myself who’ve had their lives dramatically affected by this condition.”

9. “We’re often emotionally sensitive or defensive because most of us have endured years of disbelief and wrong diagnoses, so we might be a bit prickly!”

10. “I wish the war on prescription narcotics would end at the patient level. Seeking relief for chronic pain, joint subluxation and dislocation is not pill-seeking. A patient should not feel embarrassed to ask for help with their pain management.”

11. “EDS is so much more than hypermobile joints and stretchy skin! It has several common co-morbid conditions, and the physical and psychological effects are widespread. Every zebra is different and this condition is very real!”

12. “Sometimes the reason for my pain doesn’t show up on all the fancy testing you have, and on the same note, one doctor may look at my results and say “perfectly normal” while another, who’s trained in seeing EDS-related issues, may pick up on three to five different problems all while viewing the same tests. This is why, unfortunately, EDS has cost me so much money. There just aren’t enough doctors who know how to diagnose and treat it.”

13. “We are sick and tired of being sick. Just keep on reassuring us and giving us back that hope because you’re the only one we can go to.”

14. “It’s OK to use ‘phone a friend’ or pick up some medical literature, since the MD at the end of your name isn’t synonymous with ‘omnipotent.’”

15. “They cannot possibly understand EDS more than a patient who lives with it. When we say our bodies do something their medical textbooks and studies don’t mention, they don’t get to tell us we’re wrong. We learn new things about EDS far before any doctor.”

16. “Any suggestions or attempts to help me and treat my condition are huge when so many doctors read my charts and say, ‘Yeah, I don’t really know anything about that.’ And it is so incredibly encouraging when a doctor does know about EDS and offers something to help without me even mentioning it. I feel so encouraged after those appointments.”

17. “Don’t treat us like a experiment or a trial. Yes, it may be fascinating for you as a doctor to explore our condition as you haven’t come across it yet, but remember we are people at the same time and need people to treat us with care and respect.”

Originally published: November 11, 2016
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