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By Connie Masullo


Hearing your child has a chronic illness of any kind is devastating.   It isn’t what parents dream about when they think of having a child.

Research states, more than 20% of parents have a child with a chronic illness whether it is asthma, arthritis or diabetes just to name a few.

Chronic illness doesn’t just affect the person with the condition.  The whole family must cope with the illness, make major life changes like scheduling and priorities, and somehow manage to remain a family.  Parents may struggle with their own feelings about the child’s illness while trying to help their child remain positive. Siblings and extended family may have difficulties understanding the child’s illness and many people no matter how well-meaning could be judgmental.  There are many new struggles parents will face when their child is diagnosed with a chronic illness and there is no clear roadmap to follow.  This blog hopes to cover many of these challenges and be the guide to find your way out of the darkness.  The first obstacle discussed is understanding the grief of the diagnosis.

Allow yourself time to grieve

Grieve the dream of the life you thought your child might have. It is normal to feel disappointment or grief for the way you imagined your child’s life would be. There may be many things that your child has to give up in order to accommodate to their illness.  Children with juvenile arthritis might have to give up sports or your child’s life may now be dominated by doctor’s appointments and testing rather than play dates and parties.  It is perfectly acceptable to feel this loss, it’s extremely important you allow yourself time to.  Your child is going to need your strength during this time and by being honest with yourself and how you feel will give you that ability to move forward.  Understanding the five stages of grief really helps put things in perspective.

5 Stages of Grief

Denial is the first of the five stages of grief according to Elisabeth Kubler-Ross. It helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. We are in shock and denial. We go numb. We wonder how we can go on, if we can go on, and why we should go on. We find it difficult just to get through each day. But there is a reason for this stage. The denial and shock help us to cope and make survival possible. It is nature’s way of letting in only as much as we can handle. As you accept the reality of the loss and start questioning you are actually beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface. This is painful and challenging.

Anger is the next step and a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless and powerful. The more you truly feel it, the more it will begin to dissipate and the more you will heal. Anger is a secondary emotion so there are many other emotions under the anger. You will get to those in time, but anger is the emotion we are most the most comfortable with at first. Underneath anger is pain.

After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?” We ask ourselves or a higher power “what if” and “if only”. We want life returned to what it was; we want our loved one’s health restored. We want to go back in time to recognize the illness more quickly. “If only I had realized it sooner” “If only I breastfed.” Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently.

After bargaining, our attention moves into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a loss. We withdraw from life, left wondering, perhaps, if there is any point in going on?  We are in a deep fog that we can’t seem to find our way out of. This is the darkness people refer to when they say they can’t find their way out. People may not have much patience with you in this stage. They may want to see you “snap out of it” or realize that “your life could be worse.”

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about a loss. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is our new normal with which we must learn to live. Finding acceptance may be just having more good days than bad ones.

Screen Shot 2016-04-04 at 6.01.40 PMThese stages are not a forward progression.  One day you can feel sad and depressed about your loss and the very next day feel extremely angry.  You can flip flop between stages for a bit before moving. Take your time during this process.  Others might not be patient or understand, they think you should “snap out of it” or “get over it” but everyone grieves differently.  Also keep in mind that you and your spouse could be in different stages of grief and that neither of you are wrong.  One partner may want to jump in and get involved in community activities such as the Arthritis Foundation or raise money for diabetes research.  This would not fare well with a partner who is still in denial.  Be kind, be understanding and know that your partner is doing their best to handle it just like you are.  You still are a team even if you are in two different places.

Be Kind to Yourself

And most importantly be kind to yourself as you are growing your wings.  This is a new phase of life for you and you need to give yourself time to learn.  What stage of grief are you in?  How newly diagnosed is your child?  Leave a comment or send us a tweet with the hashtag #GrowingMyWings.

We hope to see you back for our next installment of Parenting a Child with Chronic Illness! We will discuss how to take better care of yourself and your family during this challenging time.

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