When I first got sick, one of the things that I really struggled with, was people no longer seeing me.
Everyone greeted me with, how are you feeling, what are the doctors saying, have you gained any weight, etc… My illness consumed every conversation.
Staying alive and all that, that entails was a full time job. It got to the point where I disappeared & Scleroderma took my place. Nearly every minute of every day was spent dealing with Sclero, resting from Sclero, talking about Sclero, SCLERO, SCLERO, SCLERO!!! It was discouraging.
I decided not to talk about it at all. You have the fact that it’s consuming your life & then you have how people handle your illness, differently. You don’t want people to be sad, scared, tell you to eat kale & walk in the sun, insinuate you’re not as sick as you are, or just not see you at all. These are just a few of the reactions you deal with.
So you say nothing. You are funny & postive about everything. If someone asks about you, you tell them how great everything is. You dig that darkness hole a little deeper.
Then at some point I went from rarely talking about my illness, so I could have a life aside from it, to speaking my truth in the hope that others may relate and feel less alone. I share my personal journey to educate & bring awareness that this disease exists, it’s incurable, help is needed to fund more studies & those who live with it need your support.
My hope is that just one person feels comforted by the fact that they are not alone in the darkness.
“Talking about our problems is our greatest addiction. Break the habit. Talk about your joys.” ~Rita Schiano