How others talk to us (and how we talk to ourselves) about our positive and negative feelings can be toxic.  We all experience a wide range of emotions.  Sometimes we are happy, hopeful, and feel like we can take on the world.  Other times we feel defeated, tired, sad, and hopeless.  Many times we are some combination of all of those feelings.

Before I dive into this, I want to encourage you to reach out to a therapist for addressing your individual feelings and emotions.  I am not a therapist, doctor, or counselor.  These are my thoughts and things I’ve experienced and not professional advice.

Negativity Is Bad?

Going through the transplant process is hard.  Period.  And, while it is easier in many ways after your transplant, it’s not all roses either.

We know that getting stuck in a negative spiral can take a toll on us physically.  I’m not talking about negative feelings in general.  What I’m talking about are the times you find yourself stuck ruminating on negative thoughts.  Chronic stress and anxiety can lead to a myriad of health issues.  High blood pressure, digestive problems, headaches, and difficulty sleeping are a few things you might experience.

Having negative feelings is not a bad thing, though.  When you get bad news, you aren’t going to be happy about it.  Negative emotions alone are healthy responses to life situations.  It’s important to acknowledge your feelings when you feel them because they serve a purpose.

For instance, fear invokes the fight or flight response.  “Quick!  Do something to make yourself safe!”  Anger helps us to feel more in control when we’re feeling helpless.  Sadness signals that we need help.  We may need time to reflect or we may need a hug from a loved one.

It’s completely normal to feel our emotions when we have them, but work to not get stuck in them.  Learn to manage our negative emotions versus flat-out avoiding them.  Experience and acknowledge our feelings.  Reflect on why we’re having them, and learn from what they are telling us.  Once we’ve done that, we can let them go and move forward.  This doesn’t mean we won’t experience these emotions again, it just allows us to deal with them as they come.

Positivity Is Good?

In general feeling positive is, well, positive.  When you accomplish something big, you’re going to feel proud.  When your best friend hugs you, you feel loved.  You cook a meal and your spouse thanks you, you feel appreciated.

Like negative emotions, feeling positive when something good happens is a completely normal response.  And positive emotions can come hand-in-hand with negative ones.  When you receive the call that a potential donor has been found, you are likely to feel very happy.  You might also feel afraid, anxious, and sad for the donor family.

Feelings of positivity are possible, even during hard times.  You can be sick all day, feel frustrated by your restrictions, and get discouraging news about your lab numbers.  However, you also know that in many cases those things are temporary and so you feel hopeful.  But that’s not to say that we should force ourselves to feel positive.  When we do that (or are expected to do that) the positive becomes negative.

Toxic Is Never Good

A negative spiral that prevents us from seeing the positive is, quite literally, toxic.  It takes its toll both mentally and physically.  Forced positivity is toxic as well because we are avoiding our emotions simply because they are negative.  That kind of toxic positivity can come from others as well.

When I was sick pre-transplant, I had a friend who would always try to make things positive.  I can remember a specific time when I was talking to her about how awful I was feeling.

Renovations were happening at the hospital so rooms were scarce.  I was on day three in the emergency department in a tiny room with security windows.  I was getting blood transfusions and had been catheterized to monitor my ins and outs.  Because I was a fall risk at the time, I had been confined to my bed.  My kidneys were in bad shape and I generally felt rotten.  On top of that, I was terrified for my future and worse, the future of my kids.  I also felt left out of all the things I was seeing on social media.  I mean, life was carrying on without me!  That was an eye-opening and incredibly sad feeling.

Was I feeling a little sorry for myself?  Absolutely.  Had I become completely self-absorbed?  Definitely.  Could I see either of those things?  Of course not.

Her response was one we’ve all received.  It’s one I know I’ve been guilty of myself.  She told me things like, “Keep your chin up and stay positive!”  And, “You’ll get well soon!”

Nobody likes to feel negative emotions, including the people you talk to about your feelings.  So, when we share negative feelings, the response often goes to “good vibes only” types of comments.

You’re Ungrateful!

It doesn’t end after transplant either.  Some things change drastically after a transplant.  There is a whole new list of restrictions.  If you’ve received a liver transplant, there will be no drinking.  Transplant recipients are also often told not to eat undercooked meat, sushi, or grapefruit.  And because each case is different, there are other restrictions I’ve heard as well.  Stay out of lakes, no traveling outside the US, no pomegranate.  There are restrictions to the types of animals we are around.

Some can no longer work.  New health issues may arise because of the medications we’re on.  Skin problems are more prevalent so we have to be cautious in the sun.

I belong to several transplant groups on Facebook.  There is one thing I see that is very common when people ask about restrictions or vent their frustrations.  “You’re being ungrateful!  How can you complain about what you can’t do when you’ve received the ultimate gift of life?!”

Feeling grateful doesn’t mean you can’t feel frustrated or left out.  If you are a 21-year old who has received a liver transplant, your social life with friends could be challenging.  You may feel like you aren’t able to experience what someone else your age might.  You might find that going to a martini night with the girls loses a little luster when you order an iced tea.

Your life has changed.  While the sacrifices you have to make socially and physically are minor compared to the new life you’ve been given, they are still sacrifices.  Sometimes, sharing our frustration and disappointments allows us to cope.  It doesn’t mean we are not grateful.  It simply means we are experiencing some loss for the things we’re missing out on too.

Reframing Toxic Positivity

There is nothing wrong with trying to find the bright side of things.  It’s also good to try and keep a positive attitude when facing challenges like going through a transplant.  But having a positive attitude doesn’t mean you won’t feel down sometimes.

Toxic Positivity

The problem lies when someone responds intending to help but their comments are dismissive to the negative feelings you are having.  Some of these comments look like this:

• “Stay positive!”
• “It could be worse.”
• “You’ll get over it!”
• “Focus on the good things!”
• “I know someone who went through the exact same thing.  If they can do it, you can!”

These types of comments don’t do anything to help someone going through something difficult.

True Encouragement

When someone is sharing with us, we can help by validating what they are feeling.  Phrases that show we are listening and there for them are helpful.  These phrases could sound something like this:

• “Thank you for trusting me with that.  Is there anything I can do for you?”
• “You are so strong, even though you might not feel that way now.  I know your resilience will help.”
• “You are not alone in this.  I am here for you no matter what.”
• “That sounds so hard.  Would you like to talk more about it?”
• “It’s normal to have negative emotions with what you are going through.”

How to Respond

If you are on the receiving end of the “positive vibes only” conversation, there are some things you can do to get what you need.  You can preface a conversation by saying, “I need to get this off my chest.  I don’t need you to fix anything, I just need you to listen.”  Or, “I’m going through a tough time and need to vent without any advice.”

You can also stop a conversation and say something like, “actually, what I need is for you to just hear me out.”  Or, “What I need right now is to vent.  I could use your support in allowing me to do that.”

We have a wide spectrum of emotions.  It’s a piece of what makes us human.  Experiencing those emotions is all part of our journey.  But, managing those feelings and getting help with them when we need it will make that journey a little less bumpy.