Welcome to EDS, etc.!

I’m so excited to share EDS, etc. with the world! I started working on the first version of this website in 2015 because I get so many 1:1 requests for recommendations, and it can be hard to keep up and help people as much as I want to be able to. Lots of fears and a very busy life kept me from making this website a priority. I didn’t have enough spoons (energy) to manage my health full-time + work + date + attempt to have a social life + learn how to create a website. So why now?

1. I’m so mad. I’m mad that patients like me have been ignored for so long. I’m mad that it’s taken a pandemic for medicine to start to pay a bit of attention to conditions that people like me have been trying to get doctors to acknowledge for years. Only now that the conditions are sexy enough (because they are connected to a pandemic) are they finally being recognized;

2. I’m scared for other patients. More and more patients are suffering as a result of COVID. Those of us - the patients and providers - who have been working with these conditions for years can help the newly sick and newly diagnosed;

3. I want things to change. Progress will require some serious advocacy from patients, their loved ones, and other allies (hopefully including the medical community) who force the change;

4. I want patients to take control back. My fellow rare disease friend and I were recently talking about how our conditions can take “choice” away from us. While that is true to a certain extent (and every individual’s situation is different), there are lots of things we can do to take back a good chunk of that control and feel ownership over our lives;

5. I want patients to know that happiness and “success” (in whatever way you define the word) are available to us in spite of our health challenges. I absolutely love my life.

More personally, I’ve overcome a lot of fears that held me back from publicly discussing my medical issues.

I feared coming across as a complainer or someone looking for pity; I feared coming across as too aggressive with my anger for how fucked up the medical system is and how resentful I am for the avoidable pain I and others have experienced at the hands of dozens (hundreds?) of doctors. I have let go of those fears in part because I now feel more secure in myself as a human. I feel safer, in large part because I have the most magical husband who makes me feel like I am enough - and that I don’t need to (and shouldn’t) keep my voice small, that my message is important and valuable, and that my anger (that he shares) is legitimate and should not be kept quiet. It’s keeping our stories quiet that allows our experiences to continue so pervasively.

I feared imperfection, both as a patient as an advocate. I’m now what I like to call a “Recovering Perfectionist.” I feel it’s more important to get this information out as soon as possible so that fellow patients can find some relief - and providers can hopefully learn - rather than to wait until the website is perfect and all the information in my head has been downloaded. I’d rather put out a website that is “in-progress” than keep information away from people who are struggling, and looking for answers, connection, empathy, compassion, and community.

I feared how being open about my health could impact my legal career since some members of the legal community had already made it clear to me that the world of law is not a place for imperfect health or vulnerability. I’ve shifted to a place in my life and in my career in which I’m not interested in having a career that forces me to be someone I’m not or that requires me to live a life that would be unhealthy for me. I’ve re-written my definition of “success.” And, fortunately, I now work with people who are kind and with whom I feel safe being myself.

If you’d like to learn more about my life, how to manage living with chronic and “rare” diseases while also living (not just surviving), and how to support people like me, please subscribe.