He can be a total butt sometimes. Of all the people I have ever been open to about my illness, my brother has been the hardest. He just doesn’t “get it.” A disability can be more than just a physical thing. Lupus not only ravages my body but also can cause mental issues. Bone crushing fatigue, brain fog and a host of other neurological issues rock me from day to day. But those aren’t symptoms visible to the human eye. So it’s hard to explain to him I really do experience these things and I’m not “just making them up for attention.” It’s not just “all in my head” either, I’m NOT physcosematic.
Funny my brother is so ignorant and blind considering he is openly gay. Many of his friends have HIV/AIDs or have died from complications of the disease. He has walked with them through their illness. You can’t just look at a person and say, “they have aids.” That would be like looking at a person and saying “they have lupus.” You generally cannot tell by just looking at someone (unless of course… the butterfly rash but in general…) if they have a chronic illness. People all over struggle with being accepted for being gay, having Lupus is no different. Some people think it’s a choice to have Lupus just like it is to be gay. Neither one is a choice.
Never has my brother had to deal with endless doctors appointments, injections, and brutally painful tests or blood draws lasting over an hour (we won’t go there.) Waking up every single morning feeling sick. Dealing with medication schedules, adjusted doses of powerful drugs and the many side effects of tinkering with said drugs. I can’t just magically switch bodies with him to give him the Lupus experience. I would if I could, then he would understand. My pain is visible only when my joints are warm, red and swollen. But yet, when one looks into my eyes they will see pain. Parts of me complain without me ever having to say a word. Generally I do not complain about every little ache and pain Lupus gives me. I find complaining to be a complete waste of my time because it doesn’t change anything.
Now have I sat down and tried to explain Lupus to him? Definitely. How did it go? Horribly. He fought me every single step of the way. “Well you’re taking medications for it, so you’re all better.” All I can say to this is the many medications I take do not equal a cure. There isn’t a cure. Do they help manage things a bit; yes they do. Even worse “the spoon theory is just bull shit.” Yes, he did actually say that to me. I was trying to explain my energy constraints to him and the Spoon Theory is the best way I have found to get the message across. My brother totally rejected it. In the end I was frustrated and hurt. My brother couldn’t even accept me being open and up front about my chronic illness. Something I will deal with for the rest of my life and could kill me.
Words can hurt, especially from loved ones. I try to be open about my illness not because I want sympathy. I am open because I want people to understand things and to not be left in the dark about what I go through with Lupus. If I could be healthy again, I totally would be. My brother has decided to shut himself off from the truth. He can think all the lies he wants to about Lupus. In the end though, it won’t do him an ounce of good. For what you don’t see can hurt you the most and it’s no different with Lupus.
TDLR; My brother doesn’t understand nor accept Lupus and doesn’t want to.