Thursday, November 11, 2010

Getting It

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.”


  1. Whew! I'm glad you didn't comment directly on your Aunt Sarah. Do I get it? Probably not, but I'm trying.

    I know my brother is insensitive sometimes, but he really loves you. Was that really a direct quote of what he said, or is that a paraphrase of the message that came through?

    Sometimes people say things in anger that they don't really mean. Those things can fester for a long time. I know; my dad was very much like yours (it figures, since he raised your dad). All I can say is: don't expect an apology and holding onto it is only going to hurt you. Having said that, I don't have any good advice on how to let go of hurtful comments like that, but your perspective might change when you see your dad looking like mine.

    I'm going to be totally honest with you. This is only my perspective. I could be wrong, but I think what your family and friends are objecting to more than anything is the words that you choose to describe your experience. They imply that you feel like a one-of-a-kind freak, and frankly we disagree. You're not a freak.

    You have an illness. It is a serious illness, but other people struggle with different issues (medical or otherwise) that can be just as serious. I have been learning about and working with students with severe disabilities a lot lately. There is no way to compare the relative "horribleness" of conditions.

    However, if you want to try, you should get a good understanding of the other position before you make that comparisson. Ask questions like "why are you tired?" that will give the other person a chance to express their situation.

    Oftentimes, when a person says "I'm tired too," it's because they're looking for an outlet. Once they've let off some of that steam, they will (usually) be more ready to understand your perspective. If you've listened to them carefully and been respectful, they will usually return the favor. People don't respond well when you just yell "you don't understand" and leave.

  2. I am a "one of a kind person" but not a freak. There also is no use in comparing things to other illnesses. I am out to chronicle my adventures of lupus not to compare it to other illnesses. All qoutes are exact qoutes unless stated. Agreed, storming off does no good. That's why I take the time to explain things to people. Whether it be through word or written text. But like I said, the majority of people do not understand.