A letter to all future nurses and doctors, to med-students and allied healthcare professionals across the world.
For patients with chronic illness, rare disease, and especially Ehlers Danlos Syndrome, we need for you to be well prepared when you meet a patient (zebra) like us.
Historically, we have not been taken seriously and that’s led to much frustration in our experience with doctors, but maybe it’s not your fault. Perhaps, you haven’t been educated on the human side of this reality.
Anxiety is *not* the cause of our pain.
We are *not* being unreasonable when we tell you the pain is literally everywhere.
Please, for the sake of your patients.. Learn the commonly misdiagnosed medical conditions relative to chronic diseases with overlapping symptoms – I.e.: how small fiber neuropathy and fibromyalgia are often mistaken for one another.
Become educated in dysautonomia and exercise intolerance, heart blocks, bowel immotility, exhaustion, spoon theory (basically the borg exertion index)
Encourage your medical educators to put more than 2 paragraphs in your book about rare disease because you *will* inevitably run into patients with one and we are tired of being brushed off to the next cycle of consultations.
Listen to your patient. We aren’t lying or making up our symptoms. It’s not “trendy” to be chronically ill. It’s disruptive and we just want to be able to function on a day to day basis.
Become a specialist in chronic illnesses. More and more people are going through the diagnostic odyssey and shuffling from one uninformed doctor to the next. Help us! There aren’t enough of you and more than enough of us.
Be open minded. Because you may not be able to fathom what we go through in a day. Sitting can be like running a marathon. Our muscles are stiff from holding our loose joints in place.
Not everyone has to have vEDS to have vascular complications. They are common in other forms of EDS too with increasing research on hEDS and vascular complications – many are are due to severe dysautonomia.
Think.. never ending growing pains.
Connective tissue stretching, consistent micro tears from lack of proprioceptive awareness, inducing histamine response from mast cells, paving way for inflammatory response that ignites autoimmune response which in turn flares up the nervous system. It’s all connected.
Fascia in a patient with hEDS is often thicker and stiffer so imagine the soft tissue level and myofascial pain.
No. Exercise is *not* always the answer and physical therapy hits a plateau. Sometimes we can work up to strength for 7 months and lose it all in 2 weeks without warning.
Ask your team to take CEUs on EDS. Can’t find any? There’s a gap that needs to be filled here.
Are there any policies that doctors can fight for to improve quality of care for rare disease patients? Do you all ever discuss this?
Gene therapies are often a turn off, despite how badly we wish to be “fixed”.
All mobility aids are helpful. Don’t discourage the use of them.
Trust and believe your patient. We will tell you what is wrong if you listen.