The Shame Game: Why You Hide Your Lupus from Others


The word shame can be described as a painful, social emotion that can be seen as a result of an awareness of inadequacy or guilt.  Experiencing shame is, honestly, one of the most miserable and self-loathing emotions this world has to offer.   Interestingly, the roots of the word “shame” are believed to be derivative of another word meaning “to cover”; as such, covering oneself.

This definition made me think.  It made me think until it hurt.  It made me ponder these questions, which I will in turn ask you….why are we ashamed of having lupus?  Why do we “hide” it from most people?  Why do we feel the need to cover ourselves from others seeing the truth about how we feel and what we live through?

Perhaps the answer is that shame is not something that is always an internal struggle.  It can be externally assigned to us by others.  To shame someone generally means to make someone feel ashamed.  Sadly, sometimes we hide our lupus because we are afraid of what others may think or feel about us when we do reveal our struggle.  Will our children be embarrassed of us if we can’t keep up with them at Disneyland?  Will our boss devalue us if we can’t remember the question he or she asked us due to lupus fog?  Will our friends think we are lazy or unreliable when we have to cancel plans due to pain or fatigue? That is the beginning of  the shame game.  And believe me, if you win, there is no shiny new car behind door number one.  There is only self-blame and self-contempt – which are prizes I would not jump up and down for.

So how do we identify when we are involved in the shame game?  Moreover, how do we pick up the pieces and empower ourselves after we have lost a round and need a victory?

Here are 5 simple (but not always easy) ways to help you protect yourself from the damaging effects of shame:

STEP 1: Go to the source!  

Attempt to recognize the event that led you to feel shame.  Determining what made you feel shame or shamed by someone else may help you to accept why the emotions happened, allow yourself to move on, and possibly protect yourself from experiencing the same emotions again. TIP: Don’t ever use shame or humiliation to try and make yourself feel better or to try and change the person that shamed you.  Don’t play dirty, or you will most likely end up more empty and disenchanted that you were before.

STEP 2: Give yourself a break!

Learn to feel compassion instead of blame and shame for yourself.  You did not choose to have lupus, but it happened.  It is not who you are, but it is a part of you.  And, as the wise Dr. Seuss wrote in his 1959 book entitled Happy Birthday to You! “Today you are you, that is truer than true.  There is no one alive who is you-er than you.”  Love yourself for who you are and how far you have come living with lupus.  And remember, you are of value just because you are alive.  Not because of what you have done or ever will do.

STEP 3: Control the controllables.

You may not be able to control what someone says about you, but you CAN control how you allow yourself to respond.  When you allow someone to affect you by the things he or she says, you give them control.  Eleanor Roosevelt said, “No one can make you feel inferior without your consent.”  Keep the emotional ball in your court by doing your best to respond to others in ways that are healthy for you. You cannot control your lupus, but you can control how you respond to it.  As author and speaker Dennis S. Brown stated, “The only difference between a good day and a bad day is your attitude.”

STEP 4: Remember, everyone has his or her “lupus.”  

Don’t misunderstand me, not everyone has the disease lupus.  But,  in other words, everyone has something that they are battling, and sometimes, hurt people hurt people. People often say something shaming or hurtful to someone because they are hurting themselves.   Acknowledging that we are ALL works in progress, hopefully will allow us to extend grace to others.  And if we wish to receive grace, we must extend it as well.  So, “Be kind, EVERYONE you meet is fighting a hard battle.” – Ian Maclaren

STEP 5: Forgive. 

Do not wait to receive an apology from the person who shamed you before you forgive and move on.  If you choose to hold onto resentment and bitterness because of what someone said or did to you,  you are the one that is losing the game.  Not them.  Even though you may feel they don’t deserve forgiveness, YOU deserve peace. So do it for you.  

Hopefully these steps will help you if you ever get caught up in the shame game.  Be good to yourself today, you deserve a win.


Sources: Original concept by Prof. Torey Browne,,



Author:  Kelli Roseta

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