Wednesday at 11 AM PST/2 PM EST (USA) we chatted at the Invisible Illness Awareness Week Facebook Page . We talked about how illness has a way of confusing simple matters like appearance and should we try to keep looking good–or not? We generally don’t feel happy about the fact that we are wearing sweats all the time, avoiding anything without elastic in the waist, or our hair looking sloppy. And yet, when we hear, “you look great” we can get annoyed or defensive of our pain.
We were joined by Kimberli Freilinger, who is Mrs. Oregon Plus America and she lives with mitochondrial disease. Kimberli is a trained child and family therapist. She currently teaches Psychology courses part time at Western Oregon University. As Mrs. Oregon Plus America and the Oregon Ambassador for the United Mitochondrial Disease Foundation, she advocates for and supports those living with mitochondrial disease. She is a wife to high school sweetheart, Shawn for 20 years. They have two teenage sons. Being an advocate for a terrible disease while “looking fine” is a huge struggle and one we will get to discuss together!
You can still read and comment on our chat! Below are the links to the conversation.
We will be talking about appearance and invisible illness–do we want to look good or not? If you would like to comment below, please tell us in a sentence or two what you would like us to know about you, like where you are from, your age, your illness. —> Read more here
Illness has a way of confusing simple matters like appearance. We generally don’t feel happy about the fact that we are wearing sweats all the time, avoiding anything without elastic in the waist, or our hair looking sloppy. And yet, when we hear, “you look great” we can get annoyed or defensive of our pain. When you have TRIED to look good –and receive a compliment –does it still feel like your pain is being belittled? —> Read more here
So when we hear “you look so good” or “you don’t LOOK sick” we aren’t thinking about our actual appearance at all, right? What we are feeling is that our pain and suffering isn’t seen. What do you usually HEAR? A compliment or skepticism? —> Read more here
Do you feel a little better physically when you try to put on something nice, wear some mascara, wash your hair? Why do you think some people in the illness community think this is “giving in?” Are we not allowed to try to feel good about our self? A lot of people decide to just allow themselves to be a slob and tell everyone else to “deal with it.” But does it help our health to totally let go of looking decent? —> Read more here
As a beauty queen–with a chronic illness–Kimberli has had experience with both pain and primping. Kimberli, do you ever feel like you are betraying your illness community be “looking good” despite what is going on in the inside? Is to look good–despite illness–making it harder for other people who have your disease to be believed? —> Read more here
Have you ever purposely not tried to look good so someone could more easily believe/accept that you were feeling poorly? (a spouse, a friend, the doctor, a lab technician, a boss, etc) —> Read more here
Living with a painful condition can rule our body. By trying to take care of our self are we taking back some of the control? Or wasting time on a body that is going to fall apart anyway? —> Read more here
I’d like to open this up for you to ask questions of Kimberli. —> Read more here
Thanks so much for sharing today. It can help to talk about the emotions behind our reactions and I hope this has been helpful. Don’t forget that you can return here anytime and write additional comments or read comments. You can also do a search in Facebook for #invisibleillnesschat all of our chats this week. We will also link to this at our website. Here is to hoping you can feel as well as you look–or vice versa. Whatever works! —> Read more here