Just felt like talkin
I have this friend who’s mother died recently. I said nothing to her. Not really sure what to say and afraid to say the wrong thing. This is how most of my friends say they feel with me. I kind of like it that way. Saying they don’t know what to say makes me feel like they care but aren’t pretending to know what I go through. However, I was feeling like this wasn’t enough. So I have been trying to reach out for emotional support to different groups. Turns out I am not so good at that. Turning to groups of people means accepting that there will be all types of people in these groups. I am a counsellor. I am used to different types of people. However I am not usually the one needing the support in those roles.
There is a stigma, a prejudice on diseases like mine. It is hard to find support that is clear of these judgements. Even facts can make you feel judged. 90 % of patients will get ________disease from drug use. Can you imagine being the other ten percent? Constantly feeling like you have to justify your specific situation but also knowing that chances are no one is going to believe you!
No one I know has heard of Sjogrens before I was diagnosed. So they google it. I got a tube of lube as a gag gift from a girl I used to work with. It was kinda funny. But unrealistic. My story with Sjogrens seems to be very unique. In fact everyone I have come across has a unique story, you don’t find any very similar to each other. So as helpful as statistics can be sometimes, I personally don’t feel comfort in hearing them. I was very offended by something someone said the other day, but after having a couple of days to cool off I realized that each person, each and every single individual in the world has their own journey. That person has theirs, I have mine. I don’t know if this thing that was said was meant to hurt me, judge me, inform me, or if it was even initially aimed at me in the first place, but I do know that how I took it may not be how that person meant it. Because there are all types of people in the world. I am always going to come across judgment, no matter what the setting. I know who I am and what I am capable of. That’s enough for me.
Just felt like talkin
Very thoughtful post, Angie. There will always be insensitivity, miscalculation, ignorance, and presumption. You can't control that, but you can choose how you react to it. You may decide sometimes to attempt to educate the person. Other times, you may decide to shrug. Other times, you may decide to give the person a piece of your mind. Any one of these may be appropriate. I think it is important, though, to just keep trying to connect rather than to withdraw. Because connections matter, and have a positive effect on our health and well-being.
Here, you are a person, not a statistic, or a "patient." I hope that helps, too.
I do feel like this group has helped me a lot. Just reading other discussions and blogs makes me feel like I’m not so alone. I actually check the group more often then I look at my Facebook haha
I have been out and trying to catch up some. I loved your blog.The last 2 lines are wonderful. I think it is important for us all to know who we are and what we are capable of. I look forward to hearing more from you. .