I was working the information booth at a Lupus Awareness Event and a group of 12 -15 year old girls came and asked me about Lupus. One of the girls has a parent with Lupus. These girls put me thru my paces ! As I was speaking to them, I realized that I had forgotten about children being so open, honest, and curious about everything. Children will just ask what they want to know but as adults we aren't comfortable asking questions like that anymore. Within our support groups we've discussed how frustrating it can be that people don't seem to interested in asking about Lupus. I don't agree with the statement. I think a lot of the problem might be that people may not know HOW to ask about Lupus or any other illness. When we grow up we control the curiosity that we had as kids. We aren't comfortable with asking those kinds of question anymore.
As adults we don't want to be intrusive so we don't ask those kinds of questions anymore. How would you approach someone about their illness? If you knew someone had cancer and were willing to talking about it; how would you approach them to ask? How do you phrase the question so it's supportive? How would you ask a questions about someones health without sounding nosy?
On the other end of the spectrum quite a few of us aren't comfortable talking about Lupus and how it affects us. Some of us; myself included; make like Lupus is no big deal. When in reality it's the exact opposite. We also downplay Lupus because we don't want people to feel sorry for us or give the impression that we want sympathy. There are times when we shutdown the person asking by saying that "we are doing fine". Speaking for myself, I am not completely comfortable showing that much vulnerability. I also don't like to come across as weak. Intellectually I know it's ridiculous; it takes an incredibly strong person to keep fighting something that wont ever go away.
One thing for sure is that it isn't easy opening up yourself and not knowing how people will react to it. Another reality is we can't control how the information we give people is received. Some will think we are exaggerating, lazy, and even faking it. Sometimes our spouses, children, and other relatives don't what to hear about Lupus or discuss us being ill. It's hard to see someone you love go thru hell and not be able to help them. It's easier to for those close to us to pretend that we are invincible or normal. As wives, mothers, fathers, sisters, brothers, and children that's how they see us and they don't want their illusion shattered. My husband is very understanding and very empathetic and after 17 years he still goes to every rheumatology appointment with me.
I noticed about 5 years ago or so if my labs are terrible or something that he isn't ready to handle just yet he'll say "Well Babe your relatively healthy". It used to upset me so much, I mean if this is his definition of healthy what would unhealthy or sick be? Then I noticed that this is HIS way of coping until he's ready to deal with what we've learned. I don't correct him anymore and I don't jump to conclusions about those words anymore. I have to let him process this and come to a peace with it just like I do.
The bottom line is that when share our story the reaction of the person(s) isn't a reflection on us or Lupus. How they chose to react to what we've told them is out of our hands and up to the listener.