Emily Post for Cushing’s, Part I

I saw this article on my FB feed the other day entitled “12 Things You Should Never Say To Someone With A Chronic Health Condition” and it really resonated with me:

http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

So many of the statements on the list do come up on a fairly regular basis and I could see how the person making the statement was trying to be supportive while the person on the receiving end just ended up feeling invalidated.  After reading this, I thought it might serve as a great topic for an “awareness” blog post but I also felt a little hesitant to actually write the post.   On one hand, I think the information could be helpful; on the other, I sincerely don’t want this to feel like a public shaming 🙂   This post is the product of personal experience and many conversations I have had with other people struggling with Cushing’s or other illnesses.  It is really meant to be helpful and to simply give you a little insight into how a statement that is coming from a supportive place may actually not be received that way.  So, with that caveat in mind, here we go!

Part I focuses on statements that are intended to show support or to be optimistic but can miss the mark because they fail to acknowledge reality.

1.  Any variant of “You look great!” –  The intent is to make the person feel good about their appearance, this much is clear.   But it really is like answering the question: “Do these pants make my ass look big?”  There is no way you are going to get out of it alive, so the best thing to do is avoid going down that road at all.   The problem with commenting on appearance – just like with the question about the pants – is that the Cushing’s patient KNOWS they don’t look great – they have gained a lot of weight, lost a lot of hair (and in all the wrong places) and they are feeling bad about it.  Telling them they look great when they don’t look or feel like themselves at all invalidates their own feelings about how this drastic change in appearance is affecting them.  That doesn’t mean you should say “Your ass really does look big in those pants!” either.   Just don’t go there.  A better thing to say is something like “It is really great to see you.”  Very complimentary, focuses on your positive feelings for the person, and avoids the appearance land mine altogether.

2.  “You are so brave/strong.”  Some people don’t mind this one, but maybe it is because they feel brave/strong. Personally, I don’t feel brave or strong at all and I don’t like being told I am brave either.  Most days, I feel some combination of scared, helpless, weak and frustrated.  There is nothing “brave” about getting sick, not in my experience anyway.  I sometimes wonder if “You are so brave” is said more for the benefit of the speaker and less for the recipient.  Perhaps it is easier to believe an ill person is brave than to believe they are scared and struggling.  But that might not be the sick person’s reality.  So telling someone they are brave when they don’t feel that way at all just might make them feel no one wants to really deal with what they really are feeling.

3.  “You are going to be fine!”  One of the toughest aspects of dealing with Cushing’s and, I imagine, other similar diseases is dealing with uncertainty.  Do I have actually have Cushing’s?  What if we can’t find the tumor? What if the labs are negative?  What if I do have Cushing’s?  What if the surgery doesn’t work?  I still feel really lousy – am I actually in remission?  A huge proportion of Cushing’s patients have failed/repeated surgeries and new problems cropping up in the months – and years – after surgery, so “being fine” is nowhere close to guaranteed.  It just doesn’t work like that.  That’s not being pessimistic or dramatic – that is REALITY.  You don’t know if your friend with Cushing’s is going to be fine and your friend with Cushing’s definitely doesn’t know that and the uncertainty of if and when they are going to be fine is something they are probably really struggling with.  So don’t deny their reality.  Saying “You are going to be fine” isn’t reassuring – it is isolating.  A better idea is to simply ask “How are you feeling today?” and then really listen to what they have to tell you.  Or if the future comes up, follow their lead.  If they are feeling great and are confident they are in remission, acknowledge it!  If they are feeling uncertain and pessimistic, acknowledge that too!  Most Cushing’s patients I talk to really just want to be heard – not to be told how to feel or what to believe about their own particular circumstances.