Zebra Seeking Spoons

When you struggle with a rarer chronic illness, especially as a woman, you learn quickly that you need to do your own research, find your voice and find it fast. If you aren’t naturally assertive then time to start communicating your needs over and over, often to people who think they know better. I’m not just talking family and friends, but the medical professionals that soon become a merry go round in the center of your life. 

We’ve all heard of and likely experienced medical gas lighting, but I have found it especially prevelant when it comes to having Ehlers-Danlos Syndrome and some of the illnesses that accompany it. I wasn’t properly diagnosed until my early 30s and then even with a diagnosis it has taken me years to finally put together a team of doctors that is knowledgeable, open to learning and who listen to me and treat me as part of my care team. Because make no mistake I’m my own case manager. 

It’s exhausting. It’s not what I want to spend energy on. I wish the medical field was better educated in how to treat us zebras and that our voices were always taken into account but that isn’t the world we live in. Today I found out one of my best providers is retiring and I’m reeling. Gotta get back on that merry go round to hopefully find someone else as good to take his place. 

It’s exhausting but I won’t ever stop advocacy work on my own behalf or on behalf of others. It keeps me going. There are some amazing people out there who do listen and get it and who have aided in making my life better in small and big ways. I just wish it were easier to find them right off the bat to save the time and disappointment. 

Don’t let anyone tell you they know your body better than you. Your voice MATTERS. Use it