Difficult Conversations

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Difficult Conversations around Muscular Dystrophy
In "Watershed Moments", we touched on making decisions like an adult.   There are other difficult conversations in addition to those medical watershed moments of declining ability and worsening health.
GUILT    LOSING ABILITY                    LEAVING HOME MORTALITY             
It is natural to want to protect those we love from being upset or down. Putting others first, courage and love are all admirable character strengths but not if it makes you worried. What is important is that you learn how to cope, and eventually manage your own life to experience more positive feelings of accomplishment and personal happiness.   Having MD is not all bad.
Your family members and trusted friends will try to initiate conversations with you, so don’t shut them out. Be honest about your feelings and dreams. Listen to their feelings and the opportunities they may think are a good fit for you. Perhaps you’d rather talk to a psychologist or other professional?
Some conversations are difficult for all teenagers but particularly if you    have a condition that makes you more dependent upon other people          
my lovely
Guilt is a common feeling for everyone. Maybe you feel guilty asking people for assistance?  Maybe your family feels guilty about all the pressure they put on themselves to make sure you are OK? Do they ignore their own lives? Do your siblings feel guilt toward you or themselves? All feelings are normal, and it is even OK to talk about conflict and the roles of everyone in your house. Everyone needs to have a life; not just you. Be patient and talk, talk, talk.
Talk...  Talk...  Talk...
Losing ability may trigger the phases of the grief cycle – but you can choose not to feel down. Adjust your lens to see the upside of any new adaptation, whether it is moving around safely and fast in a new wheelchair; or finally getting enough rest from your first  BiPAP machine. It will be difficult at first. Use your growth mindset to understand that the strange has not become familiar yet - but it will.
People who are happy, old or young, always have the same outlook about life and death - the circle of life is an inevitable fact yet nobody knows how long it will be. We do the best we can while we are here!
Moving out may be an aspiration for you but it is not for everyone. Living independently is something that should be thought about carefully – not all “independent living” alternatives result in more independence.   Research all the options and persevere with finding the option you feel is the best fit for you.  
Source : Schrans DGM et al., Transition in Duchenne Muscular Dystrophy: An expert meeting report and description of transition needs in an emergent patient population, Neuromuscul Disord (2012),
Difficult Conversations by Deborah Robins is licensed under Creative Commons Attribution-NonCommercial 4.0 International License NB Not to be construed as medical advice