Emily Post for Cushing’s, Part II

This post is a continuation from Part I and covers what to say (or not say) when trying to be supportive to someone in your life that is struggling with Cushing’s or another serious illness.  Part II, below,  focuses on the topics of giving advice and commiserating with someone suffering with Cushing’s.

4.   “Oh, I know all about how bad hormones are – I had wicked PMS last week!”  or “Oh, I know all about exhaustion, my [kid, job, etc.] kept me up all night too!”   You may understand how PMS or sleepless nights for work or a child may feel.  That does not mean you understand how it feels to have a brain tumor pump high levels of hormones into your bloodstream and to have no idea if and when it is ever going to stop.  Attempts to commiserate by comparing the two can give a person with Cushing’s the impression that you think they are equivalent.  And they just aren’t.  That is not to say your problems are insignificant – it just isn’t a good idea to compare your suffering to someone else’s because the end result is that you are making a judgement call on who is suffering more or less.   It is not up to you to decide how legitimate someone else’s suffering is and you can’t make that call anyway because you don’t know how they are feeling.  More importantly, it is irrelevant.  The sick person sitting in front of you is suffering and needs to talk about it.  The best thing you can do is simply listen and hear them out.  Instead of “I know all about being exhausted” you might want to try “So you aren’t able to sleep at all during the night?  It is no wonder you are so exhausted…”

5.  “I wish I could stay home and sleep all afternoon/I wish I could take a few months off work/I don’t have the option of staying in bed – I have children” or anything in that genre.   This one kind of follows the same theme as the others.  I didn’t stop working because I had the luxury to do so.  I got a call from my boss one evening and was told I was being taken off a case because I was too sick to go to the office and I was trying to meet a deadline by working in three hour shifts from my bed around the clock.  I didn’t choose to sleep all day or choose to not get out of bed – if you get sick enough, your illness takes those choices away from you.   In my former healthy life, I used to get lots of things done by sheer brute force – including 100 hour work weeks at a couple points and back-to-back marathons with an injury.  So it wasn’t like I didn’t know how to push myself to get things done. And to be honest, I didn’t really believe that someone literally couldn’t get out of bed for days at a time when I was healthy.  But I was wrong and so are you.  With Cushing’s, the brute force method just didn’t work.  Trust me, I tried.  And although it may be hard for you to imagine fatigue or any other symptom being so debilitating that it would keep you from getting out of bed, that doesn’t mean it isn’t real for the sick person you are talking to.  So why not say that instead? “I can’t imagine how awful it feels to be unable to get out of bed.”

6.  “Did you get this because your job is so stressful/you were on birth control pills for so many years/you don’t know how to relax?”   or anything remotely related.  It is bad enough you are sick. The last thing you need is to be forced to engage in speculation on whether it is your fault.  Even if working too much or studiously avoiding pregnancy for decades did cause tumors a sick person doesn’t want to hear about it and that knowledge certainly isn’t going to help her now.  If you are dying of curiosity to know if job stress can cause brain tumors, go do some googling to find out for yourself.  Just don’t take the person with the tumor along for that ride.

7.    “Maybe you would feel better if stopped focusing on your illness” or any statement remotely related should be avoided at all costs.  I remember a friend asking me one time what was new at a point in time I had been having excruciating back pain that was making it very difficult to sleep or move around.   So when I told her I was really struggling with pain and she replied “Besides the pain, what else is new?” it was hard not to interpret the statement as “I am sick to death of hearing about your stupid back.”  I know it wasn’t the first time I told her about the back pain and no doubt it is annoying to keep hearing the same complaint over and over again.  But at point, the pain was bad enough to be all-encompassing.  There was nothing else new.  This back pain was sucking the life out of me.  I had been trying everything under the sun to get rid of it, including getting nerve endings in my spine burned off.  There was no hope of something new to talk about until this was somewhat under control.  My life was not “I have crippling back pain and oh, I am taking a class on French cooking!”  There was nothing I would have liked more than to think about something else or focus on something else – it just simply was not an option.  Instead of deciding on your own the person is making their problem worse by thinking about it too much, try to take a sick person at face value when they tell you they are experiencing health problems that are taking over their lives at the moment.