Managing your own care

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Managing your Medical Care
Managing your Medical Care" by Deborah Robins is licensed under Creative Commons Attribution-NonCommercial 4.0 International License. NB Not to be construed as medical advice.
Doctors may be used to talking to your parents. As a result, you may not feel in charge of your own body. If you haven’t yet, you can learn to take charge of your medical care & other aspects of your life.
"As long as I just follow doctor’s  orders, I don’t have to worry.”
“I take my own decisions, I won’t let my disorder limit me.”
"Just imagine what might go wrong later.”
“If my parents know what to do, it’s OK.”
First, which profile best matches you? A  ~  B  ~  C  ~  D  Not at all? Somewhat like you? Pretty well? or Exactly?
If profile A, B or D suits you best you are not in charge YET - but you can learn.
• Banish fears and be hopeful about your disorder or future health • Alter your perspective – your disorder doesn’t prevent you from living a normal life • Banish “Can’t”. Adopt a “Not yet” mindset and believe that you can eventually master the skills to accomplish goals • If you want something to happen muster your zest and perseverance • Accept offers of help if needed • Think critically about your own situation; don’t accept every tip or advice others give you
If profile C suits you best, you’re already taking charge of your own care.
• You choose optimism - your disease doesn’t limit your life • You stick to your treatment regimen and schedule appointments • You research far and wide – but it doesn’t mean you will act on the information • If there’s something you can’t do YET, you can learn or find another way • You are brave and voice your opinion – even to doctors • You live on your own terms and are not completely compliant
Sources:  Jedeloo, S, AL Van Staa, JM, Latour, J van Exel (2009) Preferences for Health Care and Self-Management among Dutch Adolescents with  Chronic Conditions: A Q-Methodological Investigation. International Journal of Nursing Studies doi:10.1016/ j.ijnurstu.2009.10.006 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),