So, you just got your EDS diagnosis. Now what?
My advice is to first take to time to process what this diagnosis means for you. There is inevitably a bunch of feelings all tangled up with this, give them space. Let yourself grieve, it is a normal part of getting a chronic illness diagnosis.
Then find yourself a really good PCP to help you manage and direct your care. They are the ones that will be writing all those referrals you will be needing. So, having a good PCP is essential. Make sure they are someone you trust, that listens to you and discusses things with you. If you have a good PCP, everything else will go so much smoother.
As someone with EDS, it is important for you to know that comorbidities are super common. I recommend having a cardiology work up and a neurology work up by doctors familiar with EDS as the comorbidities associated with these systems tend to be more severe and can even be life threatening.
Everything else, base it on your symptoms and conversations with that great PCP you found. Don’t try to solve all your problems at once. That’s an easy and quick way to getting overwhelmed. List your problems and then rank them by severity. Address the most severe ones first and just keep taking one thing at a time.
Join a support group. Knowing other people who share similar life experiences is very validating. Also, they will have tips and tricks to managing symptoms that your doctors won’t know about. They will also know which doctors are helpful and which ones aren’t. Read about EDS.
Research your symptoms. Become your own medical advocate or find a trusted person to do this for you. Having EDS makes you complicated and you will need to be prepared to fight on your behalf. Many doctors have never heard of EDS and most of those who have are hardly experts. Become an expert on you.
Good luck! And welcome to the Dazzle, Zebra.
Zebra Pig 