Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

How Young Can You Achieve Health Expert Status?

We’re so accustomed to talking about adults who are diagnosed with chronic and life-threatening illnesses.  It’s true that as the population rises and our life expectancy increases there will be an increase in illness diagnoses.  Adults have life experience that helps them achieve expert status on their health challenges.  They have the resources to find information, process it and then make informed decisions.  Is it possible for kids to make those same decisions?

I recently read an article by the Associated Press about, Hannah Jones, a 13 years old British girl who is refusing a heart transplant.  At the age of four she was diagnosed with leukemia and then was diagnosed with cardiomyopathy.  She understands the risks of having and not having the surgery and seems to have come to an informed decision that is in alignment with her experience.  She’s taken control of her life and is supported by her family.  Of course there has been some tirades by the medical establishment as they prepared to launch legal battles.  They don’t or didn’t believe that a 13 year old could make this a decision of this magnitude.

I believe the person that really reinforces Hannah’s strength, courage, and conviction is Dr. John Jenkins.  “Dr. John Jenkins, a pediatrician and chairman of Britain’s General Medical council standards and ethics committee, said children who have lengthy illnesses become ‘experts in their own condition quite early in life”.  That’s the biggest honor and endorsement for allowing a young person to make their own health related decisions.

It’s obvious that Hannah has given tremendous thought and energy to her health.  She’s endured numerous treatments over the years and finally she has settled on her own definition of “quality of life”.  The amazing thing about this young girl is the clarity of her decision.  She has an old soul and that’s what gives her peace of mind with the decision.

It’s definitely a difficult decision for her parents and medical providers, even if they support her decision.  Feeling helpless is distressing.  As a medical provider that feeling of helplessness brings up a host of issues.   As a parent it summons the courage to support what may be or is an unpopular decision.

When do you feel that you’ve achieved expert status on your own health?  How did you get there?  Are there any shortcuts you could share?


I've lived my life in service to others. I'm focused on mental health and how it impacts our relationships, culture, and society. Through creative expression and narrative I believe we can impact change.

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