Invisible Chronic Illness Awareness Week

[CarrieJessica]

I started the trail of diagnosis last year in late June early July, I was getting results and learning new medical jargon around the same time as the awareness week. It was a week of becoming personally aware. This year I would like to mark the week in some way but I am not sure how. Its not like the month is full of 5ks and parades, atleast not near me.

How do you mark the week? Does Dinet do something on a National or International scale?

I am considering coming out of the proverbial invisible closet on FB. My family knows, even if they don't really understand and a few friends know. I thought it would be a good way to get it out there for the acquaintances who I know must wonder why I sometimes have a cane sometimes start to sweat and look off for presumably no reason and sometime cancel plans all together.

Are you 'out' or have you chosen to be more guarded? If you are willing to share how either way has worked for you I would love to hear.

[peregrine]

I'm not publicly out, but folks at work and friends know something is going on - to varying degrees depending on how much time I spend around them. So labmates, my advisors, housemates, partner know ~everything, as do college friends I still talk with online. Other folks who are less-close friends just know that I have some neurological stuff; because I had joint pain and fatigue that predated POTS, it's just another dimension for them. I don't tend to tell new folks that I meet professionally, mostly because I don't want people to think I'm not up for being able to work. But folks I currently work with know what's going on.