Hi, I am a 27 year old woman with a fierce determination to live and make the most of life. But my body fails me daily. I have Ehlers Danlos Syndrome (EDS) which effects my heart, joints, gut and other things. I have very hypermobile joints and lots of joint pain and bleeds. When I was diagnosed with EDS, it answered a lot of my unanswerable questions like why my joints hurt, swell and how I can turn my body into a pretzel. However; EDS does not explain why I have chronically low potassium and iron or why I can’t put on weight. The question that is being thrown around now is “am I bleeding?” What I don’t understand is why the doctors ask that question but won’t test for clotting factors when then already know I bleed fast and take extra time to stop. I recently took the Self BAT test (Self Administered Bleeding Tool) and scored 14. I am getting tests done to confirm. After all, if EDS is considered to be a bleeding disorder then the logical thing to do is test for which bleeding disorder I have.
I may appear to lead an active, fairly normal life to the casual observer but in my private life I attend many medical appointments and sometimes need to visit the dreaded emergency department which seldom goes well. I use an ACROD permit so I can still do my own grocery shopping and errands when I can barely walk because of knee and pelvis dislocations. I get the stares and the comments because I don’t look sick but I am still a human being trying to make the most of life.
To the Doctors in Emergency, please remember this: patients who present with complex medical conditions as part of their written medical plan ARE human beings who live as well. Please, put aside your judgements and assumptions and treat us with respect. We are not there to make your life difficult and we certainly don’t want to take up a hospital bed. Doctors, why do you crush us with your harsh words instead of owning the fact you have no idea what this condition is or how it really affects my body? Why not Google it or listen to the patient or heaven forbid – take the time to read our file? After all, we do live in our own bodies.
I may be a person who lives with the complexities of EDS and other associated conditions but I am also a Christian, a counsellor, a friend, a nanny, a person who loves music and the arts. I also love to create and be outside.
Next time you see someone with an illness you can’t see or pronounce, please withhold your judgment and take the time to listen. Who knows, you might learn something.