I talk a lot about my illnesses. I try to be transparent and open as possible about what I’m going through and how I’m feeling in the moment. Sure, I’ll do the customary lie, and say I’m fine or doing okay to well meaning strangers who are trying to be polite when they ask how I’m doing. But with people I know, and on social media, I try to be both honest and upfront about how I’m doing. Why? Because this is who I am.
Being ill in any way is often stigmatized, and even moreso ignored. But being ill is a part of my life, and a part that will never go away. It is a part I need to come to accept, and even embrace. My illnesses don’t define me, but they are a part of who I am; they shape my every day experiences and color everything I do. I have to consider my illnesses on all occasions, and I don’t want to be ashamed of that, or hide that. It is part of my experience. My life.
But I’ve noticed people don’t know how to respond. The notion of talking about your illnesses is so uncomfortable (especially stigmatized ones and chronic ones) for most people that it simply can’t exist.
People feel the need to offer apologizes for how you’re feeling. I get of a lot of “sorry” when I’m certainly not looking to make anyone feel bad about my experiences. And I get “sorry” is in part sympathy–and maybe empathy–a reaching out to express something because they otherwise don’t know how to respond. But sometimes it just feels uncomfortable. Maybe because I’ve accepted this is my life, I feel that you can too.
And I don’t know what response I’m looking for, if any. I don’t know what I would find preferable for someone to say to me when they are looking to express some connection for what I am feeling and wish me well… Maybe, “I hope this moment passes quickly.” ? Because “Hope you get better” or “Hope you feel better soon” sort of rub the wrong way with chronic illnesses… even when I know the intentions are kind and genuine. I won’t get better;even if after moment passes, it will return.
Do any of you other spoonies have thoughts on this? I’m sure I’m not the only one who has experienced these responses and felt these feelings. Is there any responses you prefer? And, how do we help the healthy community adopt and accept these responses?