Day 25 of #MyEDSChallenge … share your invisible

This is my left knee; I’ve had three surgeries to attempt to stabilize the kneecap. The hardware is from the first surgery in 1990. I woke up during that procedure and during the second surgery on that knee in 2006. Happily, I remained fully sedated during the third surgery on that knee last summer!

The bone where these screws sit hurts all the time, more so with weight bearing (walking) or leaving my knee bent (meetings, movies, and car rides). I’ve had doctors tell me that’s not possible, and I’ve finally just decided we can “agree to disagree”. I also don’t think there’s anything to be done; the second surgeon did try to remove the screws (since they aren’t needed once the bone heals up, but normally there’s nobody going back in to take them out), but apparently the first surgeon stripped the heads of the screws so there they stay. This second surgery was when I lived in Switzerland, and my German is not great. I have a weird fascination about keeping things people remove from me—I have several teeth, including all of my wisdom teeth, in an old metal bandaid container, so when I woke up at the end of the surgery I kept asking if they had the screws. The poor people attending to me had no idea what I was trying to say, either from my bad German or drugged state, or both! 

One thing that’s frustrating for me is how often I forget that we all have invisible things going on: stresses, emotions, pains, etc. You would think I’d be more able to be empathetic and give people the benefit of the doubt, given how much I have going on all the time. Sometimes I think all the masking I’ve done has made my heart a bit brittle, and I’m as likely to fall into “suck it up, I did!” as I am to think “I bet there’s things going on under the surface that are contributing to this situation”. I feel like the attitude towards myself predicts the attitude towards others, and vice versa. So, one of my aspirations is to move both of those into a less judgmental place. If I can treat myself with kindness and curiosity, then I can treat others that way too. 

@ehlers.danlos

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