Can a person truly understand what another is going through if they have not been in the same shoes? No, one cannot. I can't say I understand what it feels like to be a 6'2" tall NBA player, a Mom or about a million various other things. People who haven't even heard of Lupus before suddenly become "experts" in thirty seconds after I strike up a casual conversation about my illness. With chronic illness there comes with it a whole list of things people say that can be challenging and spirit crushing. Nothing bothers me more than "I totally understand, believe me I do." This was coming from a healthy person standing out in the sun enjoying the day, while I was running for the nearest shadow of a building so that I wouldn't get a rash on my cheeks. They don't get it. My weekends consist of getting over the side effects of Methotrexate (chemo) and I don't just feel *tired* or *lazy.* From Friday night to Sunday afternoon I am out of commission every weekend. How does the other person feel they understands? Goes out partying Friday and Saturday to spend Sunday with a hangover. Difference between our situations: mine isn't optional, if I want to live I take the drugs I am prescribed. Sure we both get some nausea and feel crummy but at least there was a good time before hand for the other person. Before every dose of Methotrexate I take I get depressed. Going out and partying all weekend isn't depressing and having a hang over is just an expected part of it. I didn't sign up for Lupus with all of its drugs; but a party is sure an optional thing someone can get out of at any time!
My Mom has been a huge frustration for me with "I understand." No Mom you don't. Sure you've watched me battle this chronic illness for a number of years now with countless specialists and stress. But you don't have Lupus. This doesn't mean you don't care or don't have some level of understanding but you don't fully understand. The rule book that governs how I play is far different than most 19-year-olds. You give me this "I don't care" attitude whenever I talk about how I am struggling with some part of Lupus and then tell me you "understand." Could you cut the fuse any shorter? Telling me you just don't want to deal with it right now isn't an option because I can't just throw Lupus under a rug and forget about it. I wish I could. Most of the time I don't come to you with a problem unless I feel it is of significant impact to me anyways. The dent this disease has made on every aspect of my life just keeps getting bigger and I need support that doesn't just assume they know how I feel or embarrasses me. A week back I went to volunteer at an event with my Mom and I was on the recovery phase of Methotrexate. My Mom felt the need to tell basically everyone that her daughter is drugged in very explicit and mildly dramatic ways. Excuse me Mom, but no. I may be drugged, all for Lupus awareness but there is a time and place for disclosing health information. It hurts my feelings and upsets me. When I say "Please stop" and get told "It's my job as a Mom to embarrass my children." The compassion and understanding meter I know has sunk to zero. Plus it is just plain rude. (I love my Mom very much regardless of her sometimes challenging actions.)
The real kicker to all this is I just can't say "you don't understand." People get defensive, they feel hurt and their egos get crushed. I tonight had just had the last straw pulled with my Mom and said "you don't understand." Imagine how that went for me... yup I'm not even married and out on the couch tonight. Verbal hell-storms have erupted before when I just couldn't handle another minute of people "understanding." Do I have regrets? Nope. There comes a point where I just don't care anymore myself, heartless as it may seem. Part of being chronically ill is learning not to care about the world which is never in control and the words that come with it.
Best case scenario is someone who says "I don't understand." I can deal with that. No it isn't a sign of ignorance or not caring, it is a sign of truth. When a person feels comfortable enough with themselves to admit how they truly feel, the world rolls in a much smoother harmony. Pathways of conversation are opened with accepting ears. Listen and one shall learn.
Happy Lupus Awareness Month! The time to wear all the purple, use spoons wisely and remember the fighters who have moved on to a better place. "POP"- Put On Purple Day is May 17th, please join me in my purple parade. :)