Hints

I feel it necessary to stress that early morning appointments are fine if they’re the only commitment of the day, like today.  I had my meeting with my doctor, came home and climbed into bed where I slept for a couple of hours.  I feel better for doing that.  Jerry had a good time running around in the park (and rolling on something which stinks, so he got rubbed down with a dryer sheet and is now sulking at me from Don’s lap.  Don, when we came home, dozed for a good chunk of the day, and is gearing up to watch sports of some description tonight.  My plans are to finish 2 rows of my crochet project and go to bed.  I may not finish 2, but I intend to complete the one I’m working on now.

I’m feeling a little tired and irritable, so this is probably not the best time to do this, but I thought I should share a short list of questions you really should not ask.  Especially not of patients with chronic conditions.

• Did you eat?  Why not?  You should eat.  — If I could, I would.  I’m not deliberately starving myself, but I have very little appetite, and less energy.  Instead of asking this, say, “I’m dropping off a meal for you; so you don’t have to cook.”
• Why didn’t you do <whatever>? — Because, as I may have mentioned a few dozen times in the past week, I have very little energy, and I’m saving it for something that’s more of a priority.  Again, feel free to say, “I know that you’re having challenges with your energy, I’d be happy to help with <specific task>” (which may or may not be accepted, depending on what exactly is needed and how intrusive it might be.)
• Why doesn’t <X> do that for you?  — (this one is probably more specific to my situation). Because X has health/mobility concerns that make it problematic.  I don’t think that I need to provide too many explanations or justifications for this, but please appreciate that there’s a valid reason for why they don’t and not assume that it’s just laziness!  
• You should stay positive!  — I should, should I?  Have you noticed me griping and whining about my situation?  If you have, please understand that it probably means I feel overwhelmed.  If not, please consider saying any of the following:  “I’m sorry that things are difficult; I don’t know what to say.” Or  “I’m sorry that you’re having to deal with this, I’m praying for you.” Or “Ah, crap, that sucks, let me know how I can support?”
• Just keep praying. — My religious practices aren’t up for discussion.  Try offering to pray (if that’s what you believe) or hold to the attention of the Universe or just offer kind wishes.
• Why don’t you try <natural/homeopathic/“super secret” remedy that “doctors don’t want you to know about” — I have this strange practice of trusting science and the scientific process.  If you don’t, that’s your choice, but please respect that I will want to see at least 2 double-blind peer reviewed studies that cover a few hundred or more patients, and “a friend of a friend” doesn’t count.
• You should avoid meat/alcohol/sugar/gluten/food in general. —. You’re not my dietitian, nor are you on my care team, so please keep your “advice” to yourself.  As for why I eat the things I do, it’s because I need nutrition and with my problems with my appetite, the standing instruction is “eat whatever doesn’t bother you.”  So if it’s going into my mouth, it’s been approved by my medical team, of which you are still not a part.

• Jokes about “you don’t have a heart!” Or “You’ll glow in the dark” or “You look so good bald, why not just keep your head shaved?” — Just don’t.  I might give a stock answer, but believe me, you’re neither the first one with that comment, nor even the first this afternoon and it wasn’t funny ever.  Consider the rule of not commenting on someone’s personal appearance and follow that, please.
• Relating stories of difficult medical experiences, like “X went in for a hangnail and discovered they had cancer and died in a week.”  — Just.  Do.  Not.  Consider the uplifting tales of new research, or clever doctors (I’m always happy to brag about my team) or helpful nurses.
• You look so good, you can’t be sick.  —. Thank you.  But I am, and I’m not seeking sympathy or pity, and I appreciate your compliment.  

I recommend, as always, that you take your lead from the person.  If they raise comments about their frustrations it’s not an invitation for you to try to one-up.  Suffering is not a competition.  If they share that they’re anxious about an upcoming test, your job is to listen, offer sympathy and perhaps suggest a fun activity.  Please don’t break out the story of how you thought your mole was cancer and how it stressed you before you realized it was just a raisin stuck to your skin (I’ve heard that one.). Please don’t talk about how you’re so scared of doing scans, and your claustrophobia… unless it comes with a suggestion on overcoming the fear (Hint:  talk to your doctor)

Sorry for this.  As you might guess, I’ve had a few stressors, although my medical team has, as ever, been wonderful and supportive.  It’s when I talk to non-medical people, often some who I don’t speak to regularly, that my anxiety raises and I have a lot of work to do to calm down.  I’m hoping that this will help people to think before they speak — I know they mean well, but sometimes “time can never mend the careless whispers of a good friend.”  (There, aging myself by quoting 80s anthems!!)  I’m under close surveillance, so I’ll have to stop here and go cuddle a dog!  Good night!