What NOT to Say to Someone Who is Struggling

I went to see my therapist today.  She's a social worker, and in my opinion, social workers are much better than "therapists" at listening to people, empathizing with them, and helping them find their own way through their troubles.  I don't need someone to listen to me and diagnose me or give me pills to fix what ails me.  I just need someone around who will give me permission to feel what I feel without trying to judge me or talk me out of it.

One thing that came out of our conversation was my complete lack of patience with other people lately.  I talked to her about all the things people say about me and to me, how when I'm having a down moment or a bad day I get chastised for it.  She agreed with me, that sometimes people speak before they think, and even though they mean well, they can end up making you feel crappier than you felt in the first place.

I think it's only fair then to share some of the things that are just generally inappropriate things to say to someone who is chronically ill or terribly depressed, or both.  If you've said some of this stuff to me, don't feel bad about it.  I know all my friends and family want to encourage and be helpful to me and I know you don't mean me harm. 

1. "You have to stay positive.'  No, I don't.  I've found myself floating around in the whirlpool of a life with crap floating all around me and you want me to stay positive?  Before you utter those words, let the reality of my situation sink into your head:  I have END stage renal disease.  I am on dialysis.  I have a broken leg. My house is in foreclosure.  No one will hire me because they seem to think that I can't work and be on dialysis at the same time. I have a rocky relationship with the daughter who lives in my upstairs bedroom. I have fatherless seven year old who has anger issues. We won't even talk about the loneliness or the screwed up relationships or any of that stuff.  Think of your life when noting extraordinary is going on.  Think about your every day stress and then add my stress to that.  That is where I am every morning when I wake up and every night when I fall asleep.  It isn't going to change. There is no cure, no way out of this except through it, and sometimes going through something means being tuned in enough to your reality to let it make you feel shitty.  So I will have shitty days and weeks and maybe even months.  It doesn't mean I've given up hope, it just means I need to feel and process what's happening to me and I do not have to be positive all the time. 

2. "But you are so strong!"  I don't feel strong right now.  I realize I have overcome a lot of  adversity and I'm glad you have confidence in me, but I am not strong.  No one can be strong all the time.  I am grieving for a part of myself that has essentially died.  The part of me that was independent, outgoing, confident and active. This disease takes away so much and if I don't take the time to be weak, to let myself grieve for what I've lost, I will never make it to a healthier place. I am not strong and I can't be strong right now, but maybe I need you to be strong for me.  I'm sorry it makes you uncomfortable when I am not the person you used to know, but I"m dealing with some shit here, and this is the kind of shit that can make a weakling out of even the strongest person.

3. "Why don't you_____".  Fill in the blank.  Go back to work. Go visit your family. Get a new hobby. Invite people over...etc...When you start a question with "why" it sounds an awful lot like judgement.  I feel like you're telling me I chose this for myself.  It seems like you don't understand or haven't considered the fact that I have been fighting this all my life and that I have given it my best shot.  Guess what?  It caught up with me anyway.  No one will hire me once they know I am a dialysis patient. My family makes me feel like I'm losing my mind. My hobby is this blog. I'm ashamed to have people over because my house is a freaking disaster area.  I never realized how much harder housework would be without the use of one leg.  Trust me, if I'm NOT doing something you think I should be doing, I have a good reason for it or I've already tried it or I'm trying it right now.  My reasons  may not be something understand or agree with, but for me, they're reason enough.  Why don't you keep your judgmental attitude to yourself?

4. "It doesn't look that bad." I have explained a million times why my leg isn't in a cast, but for some reason, once people realize it isn't in one, they seem to think my little broken leg isn't such a big deal.  My leg is broken IN my knee joint. Meaning the bottom part of my leg on which the integrity of my knee depends is simply not there. It was crushed in the accident I had, and now my knee is being held together with pins, bone grafts and a plate. It isn't in a cast because it is my knee, and if I go too long with out moving it, it will get stuck in a straight position.  Ever tried to walk without bending your knee?  I don't want to walk like a pirate, so sue me.  I do the range of motion exercises I'm supposed to do every day even though it hurts because I want to walk normally again someday, which is something my doctors are telling me might not happen.  They say I'll probably always have a limp. So, maybe it doesn't look bad from the outside because there's no cast on my leg, but it is a horrible way to break a leg so give me some credit for putting up with this and whatever follows it.  Would you want to hop around on one leg for 3 or 4 months?  Didn't think so.

5. "Well you look great!" I get this one a lot, usually from people who haven't seen me in a while.  I don't know what they're expecting me to look like, but apparently I defy the imagination.  Inevitably they ask how I'm feeling, and then they follow that up with "Well you look great!" Thanks for the compliment.  I realize you're referring to my recent weight loss, even though it has come at the price of my health.  I'm sorry to disappoint you by not looking sick enough, but this is just who I am.  It's as though you want me to forget about the fact that I'm battling this disease or trying to recover the use of my leg and just be happy that I at least look good.  I don't mind being complimented so much, but when you tell me more than once in a sitting that I look good, I start to doubt the honesty in your voice.  If I look so good, why do you have to keep saying it? Who are you trying to convince, me or you?  Whether I look like it or not, I'm struggling with this.

6. "You're letting this get the best of you." Let me just say that the best of me is all that's left. This is a disease that strips you of everything you have ever felt good about.  It attacks your self-esteem by disfiguring your body. It makes you tired when you want to be energetic.  It makes the people in your life scurry away like mice.  It robs you of financial security, your job, your pride in what you've managed to gain for yourself. It makes you feel incompetent, alone and quite lost.  It takes away your dreams for the future and it makes you regret a lot of your past. It makes the people you love worry, it makes them pressure you to act like you feel fine when you really don't. It robs you of time and resources.  It strips away so much of who you are and once it's done doing its stripping, there's nothing left of you but whatever lies at your core.  The best of me is who I am when I'm at my lowest, and I don't think I've ever felt much lower than I do now. So don't tell me that the best of me has been defeated or that I've let this disease take even the very essence of who I am away from me.  If I'm hard to love it's not because the best of me is gone, it's because this is all I am and all I've really ever been without the frills.  

7.  "You have so much to live for." I do?  Oh, you mean my son.  I have my son to live for. I guess you're right. But children grow up and move away.  Then what?  What will I have to live for once he is finished growing up?  I know you can't answer that question for me.  I can't even answer it for myself right now, but I know it has to be more than the cause of raising my child.  He's important to me and I love him with all my heart, but I can't put the burden on him of being my only reason to live.  Nobody needs to live with that kind of pressure, especially a child.

8. "I made it through_______, so you can make it through this."  A week or so ago I made a comment online about the difficulties I'm having with my son.  Someone posted that she made it through raising her son, so I would make it too.  The difference is, she didn't have a 7 year old at 44.  She also didn't have ESRD or dialysis.  She wasn't single either.  She had a good paying job and as spouse and her health. It isn't a fair comparison.  While I'm sure she faced challenges, they weren't even close to the challenges I have.  Likewise, people often tell me of the struggles they have overcome in an effort to make me feel better about coming out on the victorious side of this disease.  But what they don't get is that no one is ever victorious over kidney disease.  It is incurable.  All I will ever be able to do is cope with it.  If it decides to take more from me than it has already, there's not much I can do about it.  I will make it through this, but I won't make it out alive, and that's the fundamental difference between me and most of the people who want to make comparisons.

9. "You shouldn't feel that way."  I am aware that I sometimes let my thoughts and emotions overwhelm me.  I know you don't like knowing when I'm depressed or feeling particularly hopeless about things.  But the truth is, I feel how I feel.  I will never tell you that you're wrong for feeling the way you do.  All anyone really needs to is to be heard and accepted, and if you really want my feelings to change, you'll hear me and give me permission to feel what I feel without judging me.  Everyone deals with situations where they should or shouldn't do or say or feel certain things, and in time we work our way out of those circumstances, but we often can't get through things if we deny ourselves the right and yes, responsibility, of feeling our emotions. This might not be easy for you to hear or go through with me, but it is necessary if I am ever going to grow past it and let it change me in all the ways I need to change in order to cope with it and live my life.

10. "Why did you do that?"  Part of being single is learning how to manage on your own without help from other people.  Being a single mother makes that all the more important.  So after I broke my leg, I had to start adapting right away.  That meant that I had to do some things for myself that were risky and it meant getting hurt once or twice trying to do those things. But when people found out that I had tried lifting a heavy box by myself or tried to make the bed without leaning on crutches (which is nearly impossible) I got the high-pitched "are you crazy" form of "Why'd you do that???"  I did it because I had no other option.  I did it because I was the only one here and I had to do it for myself.  I would like help with things sometimes, but I don't always get what I want and when I don't have anyone else to depend on I have to depend on me. I do what I do because I have to.  So don't fuss at me about it, especially if you don't want to help me with it.

I'm sure I, Like everyone else, have said some pretty stupid things to people without realizing it.  I'm positive I have.  When you've never been in the same situation as someone else, when you don't know the history behind who they are, you can't always know the right thing to say.  You want to help, to encourage and be supportive, but sometimes what you say makes matters worse no matter what.  It is in those times when you can never fail to help by just letting the person you love be who they are in that time and place. Allow him or her to experience emotions, good and bad and accept them, even if you don't understand them.  More than anything, I need to know that my friends and family love me unconditionally.  I need to know that they don't think less of me when I'm not positive or optimistic.  I need permission to be who I am, feel the way I feel without judgement, without being chastised and without feeling as if I am disappointing everyone around me by being human.

I know sometimes you're just trying to understand me.  Sometimes you're sick of my attitude.  Sometimes you've had enough and you just want a break from me and all the trouble that comes with me.  I understand that, and I'm not angry with you for it.  I just hope that by sharing this I am able to help those who want to be an encouragement to others, and maybe help other people like me who struggle with enough already, without the people around them putting their mouths in gear before starting up their brains.

And if I have ever said an insensitive, thoughtless thing to any of you in your times of trouble, I sincerely apologize.