What advice would you give to the newly diagnosed?
Listen to your body.
Be annoying.
Be discerning.
1. Listen to Your Body
Every time I think about answering this question, every variation on the answer includes this: learn how to listen to your body and follow through on what it says. At the end of the day, you are the one who has to live in your body, who has to deal with all of the choices being made for you, with you, about you. You are the one who has been living here your entire life. You know your body better than any other person. Which is why you need to learn how to listen to what it needs and how to make informed decisions about how to take care of it. With that comes the responsibility of being well informed about current medicine, science, and research. That way you can arm yourself with the tools to give your body what it needs when it asks.
2. Be Annoying
You’ve probably heard the following advice as often as I have: advocate for yourself. But for me, that hasn’t been great advice. Don’t get me wrong, it’s extremely important advice. It just didn’t really tell me…how? Speak up, sure. But something I know about myself is that in situations with medical professionals, I tend to default to conflict avoidance. It becomes difficult to know how much “advocating” is enough or too much, especially when the person I’m talking to get visibly annoyed or frustrated. Having a complex chronic illness can make you feel like an inconvenience. You are not an inconvenience. I promise you’re not even close to as annoying as you feel. What I’ve learned over the years is that if I feel like I’m being a real pain in the ass on the inside, I’m just starting to be assertive enough to be heard on the outside. If you let yourself feel annoying, it’s easier to fall into a collaborative doctor-patient relationship. Now, I fully admit that this might not be a great rule for everyone. For me, though, it’s helped give me the confidence to speak up for what I actually need rather than just defaulting to whatever is being pushed onto me by someone who might not actually have a great understanding of EDS generally or my body specifically. Be annoying. Be pushy.
3. Be Discerning
Getting a life changing diagnosis can be frightening. It can be especially frightening when your new diagnosis has no cure, or even any clear course of treatment. Something like EDS can be widely variable and unpredictable. That can leave some people vulnerable and desperate for something, anything, that could help (it’s not like the US healthcare system provides many options or much support for people like us). Unfortunately, that leaves the door open for people with less than honorable intentions to take advantage. We all want to feel better. Which means we often have to look at health-related suggestions with a healthy dose of skepticism. If something sounds too good to be true, it probably is. And if someone tells you to do something that feels harmful to your body, even if that person is a medical professional, even if that person is presenting at a medical conference as an authority on a topic, follow rule #1 and listen to your body. That healthy dose of skepticism will get you far.
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