Some people claim to understand what people with lupus (or another auto-immune disorder) are going through. The truth is most of them don’t. You have to walk a mile (or 5) in my shoes to truly understand. Honestly, the people who say “I really don’t understand” are much easier for me to deal with than the people who say, “Oh, yeah, I get it, you feel tired, well I’m tired too.” Those people make me want to shoot myself! First of all, it’s not tired. It’s bone deep fatigue not even sleep can fix most days. Second, the individual really doesn’t “get it.” Especially if they have never had to deal with personal illness before (I’m not talking about a cold here people….)
Not many of my family members “get it.” Now, they may have read information about lupus online or even read a book from the library but it’s only ink on paper. They might understand what it does or how it affects me but they don’t “get it.” About six months back my brother; mother and I were having dinner. I was telling my brother about how I had lupus and the spoon theory. He proceeded to say to me “The spoon theory is BS and honestly you’re making this out to be bigger than it actually is. It’s just in your head. Anyone can have all the energy they want to and you just aren’t letting yourself have energy.” Not a good move on his part (I of course went storming off because I was really offended.) All of the people I have ran into who “get it” just do. No explanation needed, no clarification necessary, it just clicks. It’s pretty easy for me to tell who does and doesn’t “get it.”
Other members of my family are in denial or do not want to understand. My father would be a prime example of this. One afternoon I found an autoimmune support group in the city. Granted it was almost an hour away if I got stuck in traffic but there would be other people like me there. Considering I have yet to meet another teen with lupus, I was pretty pumped about the support group. I asked my father if he could please attend with me and he replied “you’re just going to die anyways, why the helk go and bother with finding support.” Such positive words there… NOT!
My younger sister understands what I going through from a siblings perspective. While she may not feel my pain as it is, she is generally the one to see me in it. Or she may not have her hair falling out but she watches mine. All things said and done, she “gets it.” Her understanding is not as well rounded as mine but she does understand when I say, “I don’t feel good and am tired”, it means I REALLY don’t feel good and I am REALLY tired. She understands that part of lupus.
As for my mom, she “gets it” to an extent. That’s about where I’d leave it too. Some aspects of lupus just have to be experienced first hand. A person without lupus cannot experience them. No simulation or similar experience will create the understanding to some of the aspects of lupus. Even the informational books and videos do not do lupus justice. It is an experience like no other. And it’s hard to “get it.”