Resentment is an incredibly strong emotion.  Most of us will deny that we resent anything.  We might say we are angry, frustrated, disappointed or saddened by an action or situation that has occurred.  But, we rarely believe within our own minds that we are resentful in any form.
But it does exist.  And if we are to heal the bitterness from within, it is our responsibility to acknowledge that which we take exception to, accept our feelings and move toward a solution to find peace and resolve.
How does this fit in the world of Rare Disease?  In my rssadvocate.wordpress blogs there is a reference to Russell-Silver Syndrome and a thought on Loss – a form of grieving from which we lose the ability to accept the truth that in the case of RSS, our children are not the “beings” that we expected when they were born……..thus, the feelings of loss.  At times, I have found that loss has a direct correlation with resentment.
I have met and spoken with several mothers who became depressed and/or somewhat despondent through their rare disease experiences.   After encountering loss with the initial diagnosis and then a sense of fear and devastation during the ongoing treatments that are prevalent with their children’s chronic rare disease, this group of well-intended mother’s became aware of another feeling that at first was not well understood.  They were angry.
All of the mother’s I conversed with felt particularly UN-appreciated by family members and friends, in addition to disappointment in themselves for their own feelings.  Some of these feelings included their lack of ability to maintain a smooth running household during multiple doctor appointments; giving the attention to the “other” children as well as attention to friends and family; feelings of fear and anger,  and disappointment of others reactions to their newly diagnosed children.
Many of these mother’s began to resent the lack of understanding and nonchalant attitudes from family members about the scope and magnitude of the situation.  And there was a big resentment to their spouses for their inability to share in the tasks necessary to maintain the level of health care required for their children.  Even more interesting, I met a mother who resented her own special needs child – not for whom he was, but for whom he wasn’t and how his life had made such an overwhelming impact on her otherwise perfect world.
Resentment is real and scary.  And when the opportunity presented itself, I took the opportunity to remind each mother that this emotion, above all others, needed special care.  Not only did I remind them that resentment is normal and that they were not alone in their feelings – but, what I believed the most important action they needed to take was to recognize where their resentment came from, to acknowledge the resentment and learn to find a solution and live with the outcome of our decisions.
We must learn to accept ourselves, our children and our situations.  We are in charge of the outcome of our decisions and we can either choose to congeal with our utmost desires of the closing aspiration – or we can fight endlessly with ourselves and the world around us for something that can and will never change.  We must accept our future – but, with an understanding that it won’t necessarily be as we planned, or that of which we assume would be like others expect.  Instead, we must find our own niche or place within our circumstance – for which we feel most comfortable.  And we must learn to accept the lack of understanding that results from family and friends who are not closely associated with our circumstances.  We must learn to be good teachers, love ourselves, and face resentment head on so we can live free and content with our world around us.
Many of the mother’s I have spoken with eventually faced their feelings through meditation, therapy and re-focusing their energies on themselves…..but that’s another topic for a later discussion <wink>.
Heather J. Earley

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