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.
- They can’t fix it.
- It means admitting that they have wrongly dismissed symptoms as psychosomatic for decades.
- It answers too many questions at once.
- People who have it often have a lot of things going on and it feels to doctors like their patients are “diagnosis shopping.”
- 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:
- EDS can’t be fixed, but knowing and understanding what is going on helps us better treat the issues that do come up.
- 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.
- 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.
- 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.
- 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.