Last time in Pink Sheep and Living with Lupus I asked a couple of questions. Do you wish people could tell you struggle with autoimmune disease or are you glad that they can’t tell most of the time? Is it a blessing or a curse looking good?
Here is what a few of you said:
- Brenda prefers to look good, knowing that the people who love her, know her struggles, and see past the outward appearance.
- One person, only wants the people closest to her to know about her illness, but is quick to share her fibromyalgia story with those needing empathy and encouragement.
- The Lupus Adventurer likes to use the to educate people about “the invisible illness” lupus. It does bother her sometimes when people do not believe she is really sick. Rash
- One person does not like using a motorized cart at the store. They believe people will think it is because they are overweight and out of shape.
- One woman says it hurts when people imply it is something she is doing, or not doing, that is the cause of her illness. She says it can be easier to just not talk about it.
Living with systemic lupus, Sjogrens, and fibromyalgia is challenging enough most days, let alone to feel as though we have to defend how we feel or don’t feel. Some of these comments show how people judge by outward appearances.
When my daughter was much younger she looked at me in disbelief and a little disgust when I could hardly walk upon exiting our vehicle. Why you say? Because just the stop before I could walk almost normally. My own daughter thought I was faking it. I had to get beyond my hurt feelings and educate her. Now grown, she is very familiar with the unpredictability of the illness.
Very few people know what lupus is, let alone its symptoms. I have answered many questions about lupus and Sjogren’s because most women are genuinely interested to find out about these diseases. So, instead of getting a little frustrated when people tell me I look good, I will begin using that as another chance to educate someone about lupus. How about you?
Back to our question. Overall, it seems people would like those around them to know when they are not feeling well and need some extra help or grace. When people cannot detect what our status is, it is important for us to effectively communicate our needs. Depending on the situation, looking good can even have its advantages.
As always I welcome your input. Thanks to those who took time to comment or write to me. I pray God will strengthen you.