What Not to Say

When you face something...let's just say, "heavy" in your life, the worst thing for you is the additional pressure of dealing with the sweeping insensitivity and ignorance of other people. This is a precarious situation, because probably the best thing for you is to talk about your issue. I, for example, take the direct approach in dealing with my affairs. Granted, I had already lost 15 pounds and missed lots of school before I mentioned that I was sick to anyone outside of my immediate family. So, maybe I should say: "I take the direct approach when the indirect approach fails to provide adequate explanation for obvious cause-effect relationships." Point is: there's not a lick of sense in trying to hide a disease you can't hide--but, when you coax that devil out into the light and other people begin to see it, you expose yourself too.


What you need to read BEFORE you read the lists:
I have an uncommonly AMAZING support system. I am grateful every day for every kindness shown to me. These lists, I hope, do not reflect any kind of ungratefulness or bitterness. Also, be aware that I'm blessed with a certain mental fortitude and sense of determination that not everyone possesses. I can handle anything you say to me, really. If I love you, I'll call you out on it. If I like you, I'll find a way to shut you up. If I don't like you...well that's a non-issue because I don't associate with people I don't like. I've got...what did they call it at the bank? Huge balls. So, while you're in danger of hurting my feelings, you'd probably never know if you did, and I promise, I bounce back really quickly. I hope what follows is funny, and that it helps everyone with the huge learning curve any chronic diagnosis imposes.


WE, THE DISEASED, SHOULD:
1. Realize most folks mean well. Just like I have my very own personal dealing-with-shit style, everyone else in my life does too. They have a right to their coping mechanisms, just like I do.
2. Take everything with a grain of salt. The people we know who think they have vast medical knowledge because of their access to Google? Yeah, they're not doctors. Wikipedia doesn't know more than your doctor. Unless your doctor is a moron. Neither of mine are.
3. Not think people can or should understand how we feel. Even if they were doctors, they still wouldn't have the transactional experience you have with your own body. Any doc worth his fee will be the first to admit this.
4. Not be mean. Even when we really, really want to.
5. Politely change the subject if someone hits a sore spot.
6. Not take everything personally. For example: if you are significantly overweight (ahem) and your illness causes you to suffer rapid weight loss, when people make jokes about wanting your illness (and oh, they will), don't punch them in the throat. Laugh at them. Laugh long and hard. Because obviously, they're completely insane. However, if similar people mention that they bet you're happy about the weight loss, do punch them in the throat. They deserve it. You can laugh afterward.

THOSE WHO KNOW SOMEONE WHO IS ILL SHOULD:
1. Understand that any and all well wishes are welcome. Your honest concern can make a lot of difference in the quality of a day.
2. Think before you speak. When your loved one feels awful all the time, ESPECIALLY if they have any kind of chronic pain, they’re sensitive to things they ordinarily wouldn't pay any mind to. The ordinary, simple things may rub them raw. (In my case, literally. HA!) You shouldn’t be held accountable for every tiny stupid thing you say. I hope to never be held accountable for every stupid thing I say. Just...try to be forgiving if your loved one occasionally bites your head off.
3. Understand that if you do know someone with a similar disease, most sick people want to hear what happened to them. Unless they died. In which case, just don't mention it. Speaking from personal experience, I never felt better about my ability to cope with my own situation than when my friend told me that his friend, who has the same disease, is a similar age, and has already faced complications I can barely imagine, is "the same guy...but he can't eat some foods and is physically weaker than before." I can't adequately describe how comforting I found that sentence.



Alright, now that the basics are out of the way, let's move on to the big guys. These are some conversational tidbits in which I cannot conceive of any level of appropriateness under any circumstance. You may not be aware of how these things sound, but trust me, they make you look like a jackass. You don't want to look like a jackass, right? I didn't think so.

THINGS NO ONE SHOULD EVER SAY:

1. YOU SHOULD NEVER EVER TELL A SICK PERSON HOW TO FEEL. For example, "Cheer up!" or "You’ll be fine." When a person is told that his or her life will never be the same again, they have every right to be devastated, even to enter a period of mourning. Sure, it helps to stay positive. There's nothing wrong with saying "It helps to stay positive." But try to think of it this way: it took that adult you know who has been recently diagnosed with Disease X, 20+ years to adjust to the life they knew before the disease. They should not be expected to adjust to their new normal in just one or two hours, days, or weeks. They're allowed to be upset. You'd be upset too. Having said that, if you know someone who is struggling with a chronic illness and feel this person may be depressed, encourage them to get help. Tell them there is no shame in how they feel, tell them you're worried, be careful to purge yourself of self-righteousness before you do it.

2. YOU SHOULD NEVER EVER SAY YOU UNDERSTAND. You can't understand. It's a stupid thing to say. Diseases, and the physical and emotional pain they manifest, are different for everyone--because every single person has a different brain. There is a difference between sympathizing with individual symptoms and attempting to empathize with a disease you don't have. (If this difference eludes you, click the links for definitions.) The first is fine, the second is always entirely unacceptable. A particularly frustrating facet of this type of conversation is when drastic, ridiculous comparisons are made between two obviously incongruous scenarios. Do not EVER make drastic, ridiculous comparisons. Examples: I would never tell someone who had cancer that I understand their residual joint pain from chemotherapy. Why? Because, while for the past few days my own joint pain has been debilitating, the truth is, my joints have only hurt for a few weeks and probably won't hurt anymore once my primary disease is under control. My increased likelihood of losing my colon is nothing like a double mastectomy. See the difference? Your food poisoning is nothing like my UC. I don't care if you were in the hospital. Unless you were told you'd have that same food poisoning for the remaining 50 years of your life, I really don't want to hear about it.

3. DON'T COMPARE OLD PEOPLE TO YOUNG PEOPLE. Sick people feel old enough as it is. Telling someone that they have the same symptoms as an 80 year old inspires the opposite of hope.



In other news: I've lost another three pounds since last week's weigh in. Project Iniative: Slow Down Rapid Weight Loss=System Failure....rebooting....