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Handle With Care: Why Doctors Don’t Like the EDS Diagnosis

I feel like many doctors resist Ehlers Danlos Syndrome (EDS) diagnoses for their patients. On the surface, it baffles me why anyone would resist an obvious answer to a complex question. But EDS isn’t a sexy diagnosis, for a variety of reasions.

  1. They can’t fix it.
  2. It means admitting that they have wrongly dismissed symptoms as psychosomatic for decades.
  3. It answers too many questions at once.
  4. People who have it often have a lot of things going on and it feels to doctors like their patients are “diagnosis shopping.”
  5. Admitting that there is a legitimate source of chronic pain means another potential patient on opiates, which invites scrutiny.

The thing I try to make clear to my care providers is this:

  1. EDS can’t be fixed, but knowing and understanding what is going on helps us better treat the issues that do come up.
  2. Sometimes it’s good to be wrong. Why would you be more attached to your own dignity than to your patients’ well-being? Be humble in your not knowing. The worst doctors are not those who make mistakes, but those who cannot admit when they have been wrong.
  3. EDS actually makes a lot of issues make more sense. Rather than wondering why there is a cascade of failures going on, it lets you more easily hone in on why those failures are happening and pick up on new issues early. Our bodies are 80% collagen. When all of that collagen is a little bit wrong, it means a lot of things can happen that wouldn’t normally. EDS lets you stop blaming patients and start helping them.
  4. Literally no one wants lots of diagnoses, but if one actually has those things going on, it’s better to know and understand than to be miserable wondering. I don’t want hypothyroid, fibro, RA, Sjogren’s, allergies, asthma, apnea, IBS or hypermobile joints, but knowing there’s a specific underlying cause and knowing that those are the things wrong means that I can treat them more effectively.
  5. Most people would rather find ways of treating the things causing pain than simply medicate the pain away. Much EDS-related pain can be reduced by other means. Physical therapy. Joint wrapping. Special diets. Immune modulating drugs and steroids for autoimmune issues. CPAP. Antihistamines. Yes, people need to have their pain mitigated and treated appropriately, but it’s even more important to understand the source of the pain and fix it. I have a laundry list of medical problems… and almost never take opiates because my physical therapy helps so much and I have other strategies.

No one likes feeling helpless, but being unable to directly treat the underlying condition doesn’t mean that it’s not important to know what it is. Doctors are less helpless when they know why a thing is happening, and can anticipate and recognize complex issues more quickly because of the underlying diagnosis.

The thing that makes patients feel most helpless is when doctors give up on them.

Please don’t give up on us.

Also… it has come up a number of times among people I know that some doctors are under the misguided notion that Ehlers Danlos Syndrome does not cause pain.

While it is true that simply having EDS is not inherently painful, thinking that that means that the syndrome is not the cause of pain is naive.

  • EDS may not cause pain, but dislocated and subluxed joints are very painful. Since our collagen doesn’t hold us in alignment very well, these things are pretty common.
  • EDS may not cause pain, but sprained ankles and wrists, slipped disks and torn skin are all painful. Fragile collagen is much easier to injure.
  • EDS may not cause pain, but many autoimmune disorders range from uncomfortable to excruciating. (And people with EDS are much more likely to develop those disorders because our collagen does not function well as a barrier.)
  • EDS may not cause pain, but any disorder of the gut has the potential to be excruciating. The gut is made of collagen, and people with EDS are much more likely to have IBS, Crohns, gastroparesis and mast cell disorders that can cause wrenching gut pain on a daily or even hourly basis.
  • EDS may not cause pain, but being tired is like being tortured. Sleep apnea and insomnia are very likely in EDS.
  • EDS may not cause pain, but anxiety, fear and lack of support make pain much harder to deal with.

And nothing is quite as scary as having your doctor not believe you when you say you’re in pain.

Our bodies are mostly collagen. Every single system in our body has collagen components. Collagen is a complex protein which can go wrong in many ways, not all of which we fully understand.

In EDS, every single bit of collagen is a little bit wrong. It is not so very surprising then, that bodies affected by EDS don’t quite work as expected.

We don’t expect every doctor to understand every single aspect of EDS. But there is not one single specialty that deals with EDS. We go to our primary care docs, our geneticists, our rheumatologists, and often end up passed from caregiver to caregiver with no one being willing to take on the big picture or coordinate care effectively. Even the big diagnostic centers often turn people away, saying, “We can’t treat that.”

We don’t need doctors to treat our EDS.
We need them to treat us, and address the cascade of issues that EDS causes.

Published in Ehlers-Danlos Syndrome Fibromyalgia Health Rheumatoid Arthritis

11 Comments

  1. Patty Patty

    If I had a penny for each time I was told that it was “in your Head” I’d be a millionaire! Then there are the others that say “your responses don’t make any sense”. The one that hurt the worst is when a Neurologist said “its just a minor inconvenience”. The last one was said with the door open. The nurse sitting outside turned around with a look of disbelief on her face. I had been going to him for a year!

    I don’t expect special treatment just to be treated with respect,

    EDS 9:9

    • Ally Ally

      Or the “Stop reading about it so much and you will feel better”. Uhm i am actually reading about it because you are not! I need to find solutions that you dont seem to be even looking for.

      • Dana Dana

        This just happened to me. Hand in the face “just, stop…stop” followed by telling me my research is causing paranoia and anxiety and I’m out of control. The only anxiety I have is when I see doctor’s, I wonder why…thank you for sharing because it means the world to me xoxo

        • Jenrose Jenrose

          Oh gosh, I’m so sorry. I’ve been in those appointments and they always left me vibrating with rage.

    • Ellie More Ellie More

      Well, if you are involved with today’s medical system, you can forget being treated with respect. Doctors don’t do respect any longer. They are taking their frustrations out on patients. It’s constant.

      I’ve been so abused verbally and physically (by life threatening conditions being ignored) that I’ve considered going to the police to accuse my doctor of attempted murder.

      If you are not well, you aren’t wanted by the medical profession any longer.

  2. Jacquie Klockow Jacquie Klockow

    “We don’t need doctors to treat our EDS. We need them to treat us, and address the cascade of issues that EDS causes.”

    So true! Thank you for stating it so succinctly. Good article.

    ZebraPrincess
    EDS 8:9

  3. Andrea Nero Andrea Nero

    As a practitioner with strong family history of EDS this is good info, saving and will include in materials I share with other practitioners. Love #3.

  4. Tracy Tracy

    I was at a neurology appointment today and asked him about EDS and his exact words were “Why would you want to be tested for EDS? What difference would it make if you did have it? It most likely would be treated the same as your POTS, fibro, & migraines anyway…”
    I told him it would at least provide me with an answer to the severe joint pain.
    My husband & I we’re both in shock from his lack of concern/knowledge.

    • Jenrose Jenrose

      Yeah, like it wouldn’t matter that we process drugs differently and are at greater risk for a variety of issues… if you have POTS, fibro, migraines and severe joint pain, I mean… that’s pretty much EDS in a nutshell, no?

  5. This hits the nail on the head for sure! After being born with clubfoot and a list of many other symptoms along the way, my daughter was formally diagnosed at 13. (By a physical therapist who picked up on her symptoms, and mind you, this was after almost 5 years of specialists testing her and coming up with nothing.). Her pediatrician even said, “I’ve only seen 2 kids tested for that (EDS) and they didn’t have it. She doesn’t have that!” After diagnosis, she called, apologized, said she didn’t know much about it but now she would start learning! She’s great!
    I have become my daughters advocate and study as much as I can so I can inform the doctors! Although, we are on the right track now after I hunted for a specialist in EDS ( which would be a metabolic disease/ connective tissue physician.). She now has a plethora of docs from 2 hospitals and I have huge medical file bag I carry with us, but we are relieved and happy to finally have a team on our side!

  6. Jennie Kilbourne Jennie Kilbourne

    I have dysautonomia. I have lived with chronic pain my whole life. It is not easy believe me. I appreciate reading these comments, I don’t feel so alone.

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