What if you, as a child, had unusual symptoms like falling down or memory problems?
And what if your mother found out it was multiple sclerosis (MS) and never told you? Maybe she did it because, at the time, there wasn't much to be done.
Marcia Hirst lived that story. It was 30 years later when she received a formal diagnosis and began getting modern, much improved treatments.
Today she uses a scooter to facilitate mobility, and she is blessed with 11 children and many, many grandchildren who are the light of her life.
The whole issue of when to tell a child, or even an aging parent, of a serious diagnosis, is a complex one. In some countries, for example, they never use the word "cancer."
However, most experts today agree that people have a right to know what they face and you have a responsibility to help them become informed in a loving way.
If you are the one with the health problem you can ask questions of family members and doctors so you have the whole "scoop" and you are the one who guides choices.
Obviously in the case of children, a parent will make decisions, but helping them understand what is going on or what may happen is the most honest approach.
Marcia Hirst doesn't carry anger towards her mother for keeping the MS a secret. One wonders, though, whether earlier treatment may have staved off the significant disability she has now.
You can hear Hirst tell her story in her own words in her video on Patient Power, titled “Don’t Let Multiple Sclerosis Take the Joy Out of Your Life” at http://goo.gl/zUo4f/
You can also hear how one of her lifelines is connecting online with others with MS, both to get information for herself and to support others, through Patients Like Me.
Patients Like Me offers free online communities for patients at www.patientslikeme.com/ These kinds of disease-specific communities are a wonderful tool for people who live with serious conditions.
Hirst cannot undo the secret that was kept from her. But today keeping secrets from the patient, young or old, can only create anxiety, lead to delayed treatment, and inhibit hope.
Resources:
Interview, Marcia Hirst, Everett, Wash., 6/26/12, Posted online on Patient Power at http://www.patientpower.info/video/marcia-hirst-don-t-let-multiple-sclerosis-take-the-joy-out-of-your-life?autoplay=1
Patients Like Me, About Us, Accessed online on 7/12/12 at http://www.patientslikeme.com/about
Reviewed July 12, 2012
by Michele Blacksberg RN