Stay Positive: Good Advice or Unrealistic Expectations?

Rosa, from Orange Is The New Black on Netflix

I like the Netflix show, Orange is the New Black.  I just finished watching the second season in which the story of Rosa, a seasoned prison inmate who is battling terminal cancer is revealed.  You learn that in her youth, Rosa was obsessed with money and the adrenaline rush of robbing banks. The jolt you get when a flashback of Rosa's youthful adventures fades back into present
time, showing her bald head and aged skin is most unsettling.  One scene in particular that struck me was when the Prison Counselor, Mr. Healy is sitting at his desk explaining to Rosa that the state will not pay for the cancer treatment she needs to stay alive. He follows that up with a speech about the importance of staying positive, and a comparison to someone in his family who seemingly beat cancer with nothing more than a pleasant attitude.  Rosa isn't buying it.  She heard what her doctor said loud and clear, that without that particular treatment, she was a goner.  I identified with her so much in her response to Mr. Healy's well intended pep talk.  She remains outwardly angry, but you can see the grief in her eyes and she accepts her diagnosis and refuses to grapple for the false hope that Healy is dangling in front of her.  He is visibly uncomfortable with Rosa's resignation, as many people in our lives are when we don't jump on the "positive attitude" bandwagon and stay there perpetually.

Of all the pieces of unsolicited advice we ESRD patients get from everyone, from family members to perfect strangers, "You have to stay positive." is probably the most heard and most frustrating one.

Often, we feel pressured to smile and pretend that everything is fine so we don't make the people around us sad or uncomfortable, but on the inside we are dealing with a stark reality.  We are chronically ill.  There is no cure for what we have. There are only ways to manage and buy time, and none of our options are particularly bright and cheery.  On the outside we may look as healthy as the next person.  Nobody knows about the tube taped up to your side underneath your clothes unless you show it to them. Nobody notices the access in your arm unless you choose to wear short sleeves so they can see it.  Those people aren't there at night when you hook yourself up to a machine, and they aren't with you three days a week at the clinic while you get your blood clean. Our hair doesn't fall out, we don't have to endure the nausea and discomfort of chemotherapy, so how bad can it be?  We often feel the need to play along with the expectations of other people in order to keep them from showing pity for us, or to keep them from worrying about us.  They need us to stay positive.  They are asking us to stay positive, because they can't handle us when we are realistic about where we are and what we're dealing with.

So I am wondering if "Stay Positive" is really a great piece of advice that through a mind-body connection leads to better outcomes for ESRD patients, or is it an unrealistic expectation placed on us by the people in our lives who aren't able to cope with our illness.

There's certainly something to be said for a positive attitude. It motivates you to keep working towards a happy life.  It helps you cope with difficult days and it keeps you connected to people in more fulfilling ways. However, I think it is truly unrealistic and even unfair to demand that someone who is dealing with the pressures of this disease or any other life-threatening illness remain in a positive state of mind at all times.  Part of processing the loss of health from chronic illness is finally coming to an attitude of acceptance.  Perpetual hopefulness requires a certain level of denial to maintain.  At some point, if we are to assimilate our losses and find peace with our lot in life, we have to acknowledge and accept what is happening to us.  Without that acceptance we will remain stuck, our personal growth will be stunted and we may miss out on a very important part of who we are supposed to be and what we are supposed to learn from life.

The reality is we will not be cured. We will not go into remission.  We will be coping with ESRD for the rest of our lives.  We will either be slaves to the dialysis machine or we will be transplanted with kidneys that might or might not last.  We will be swallowing hand fulls of pills just to stay alive, we will suffer the side effects and financial blows that the cost of maintaining life imposes upon us.  The reality looks pretty grim, and if it's your reality, you can only refuse to look at it for so long before the ugliness of it catches up with you.

We shouldn't feel bad about not being able to maintain a positive attitude all the time.  We shouldn't stuff down our thoughts and emotions to protect the people around us who can't or won't come to terms with what we are facing.  We can feel down sometimes.  We deserve the opportunity to grieve for the lives we used to have and to grieve for a future that seems fraught with stress and struggle instead of whatever we had always planned.  We need the space to make the transition from healthy to sick in our own way and in our own time-frame and we don't deserve the admonition to be positive every time we express a negative thought.

There is  often a fine line between dealing with reality and allowing yourself to fall into the trap of self-pity.  Staying in a place of sorrow and pity for yourself is no better than walking around with a fake smile plastered on your lips.  Either extreme robs you of authenticity. If you are perpetually positive, you may be unable to accept and process the negative effects of your disease, if you are perpetually depressed and full of self-pity, you will never learn to value and live in each moment you are given.

We need to give ourselves permission to feel our pain, our sorrow and even our hopefulness.  We need those who love us to understand what a complex process we are going through, and that it wouldn't even be healthy for us to never have a day when we aren't discouraged by it.  We are human and often our weaknesses and fears catch up with us, even when we are trying our best to keep a positive attitude towards life and our disease process. We don't want this for ourselves, and we don't want to put you through it with us, but it is what we have, so give us the freedom to experience it wholly in all its negative and positive ways.  Let us grow through it and with it, as you try to accept us even on days when we can't take your advice.

Maybe you're wondering now, "If I can't tell you to stay positive, what can I say when you're down?" And the best answer I can give you is to just be there with us.  Acknowledge with us how crappy things really are.  Let us be who we are in each moment, allow us to feel our emotions without judgement.  Don't shame us for the days or weeks or even months when we feel buried by the stress of a life with ESRD.  Just stand with us, give us permission to be.  Remind us that you love us no matter what.  Give us permission to grieve both aloud and in private.  This is our experience. It is our chance to grow, to become something new and better, but we will never achieve that if we aren't allowed the chance to process the feelings that well up inside us.

And perhaps during those times when we can't find anything to feel hopeful about, you can take up the slack and feel hopeful for us until we make it over the next hump and find our own place of peace and hopefulness once more.