“The doctors say it’s never going to get better. A nap won’t help. She’s not lazy. She struggles with pain and fatigue every single day. She has lupus, fibromyalgia or arthritis and it’s not the same as your cold or body pain. The most frustrating part is people look at her and say “you look good,” while her body is being attached inside.” My brother posted this on Facebook this week; he quoted something he’d seen that describes my sister-in-law’s. By the time she was diagnosed I had some familiarity with the autoimmune disorders and fibromyalgia other friends.
Everyone is shocked when the cancer diagnosis comes. But cancer is visible, there is a before a during and after. When we say, you look good, it’s after a battle with chemo or radiation, hair loss, weakness or bed stricken. With cancer, we can process what is going on. We can cheer the journey to recovery or mourn defeat. But how do you support, autoimmune disorders if there is no recovery?
My friend with lupus was relieved when diagnosed, but frustrated. ”I tell people what’s wrong, I have lupus and I’m in pain. But, they say, well you look good. Well, how am I suppose to look? Do you think I”m not going to comb my hair, wear makeup, or get dressed?” Busted. I know I have said similar things. Many of the comments on my brother’s Facebook post, were things I have said in the past.
Those comments are about me. My brain is trying to process how I would cope. Well of course, I’d get a second opinion, I’d try diet, exercise and I have heard many people have hidden food allergies that mimic diseases. The truth is, I can’t handle ” it won’t get better.” My comments are all about me and what I would do, for me. I forget I am having a conversation with someone who is in constant pain.
What would you like people to know, what’s the most biggest conception about autoimmune disorders, what therapies have you found useful, etc. There are many ways to have a conversation without “try,”because if you have a conversation, you often find your “try” has been “tried.” Maybe it’s not the person with an autoimmune disorder that needs to try, maybe it’s you who need to try? Try to listen, to learn about the disorder, even go outside your comfort zone and correct people who dismiss autoimmune as all in someone’s head. Sure, some of these conversations may be uncomfortable, but think about the constant discomfort and pain this group is in. I found Chronic Mom to be a good start to get an idea of the autoimmune world and struggles.