Should I let my young children know I have MS?

Question:
I just found out that I have MS and my kids are 3 and 5. They are too young to understand but old enough to notice that something is wrong with mommy. Has anyone out there been through this or have any advice? I want to handle this the right way.

Answer:
A new diagnosis in a parent with young children is always a difficult time. Most guides are generally written for children over the age of 5, so I would suggest some modifications. It is most important to try to keep things simple for now, if possible. 

1. Tell them only what they need to know and can understand
2. Provide reassurance and comfort
3. Try to keep to your usual routines when possible and provide explanations for any change in routine. Remember, a house suddenly filled with adults (both family and friends) that are usually not present, all of whom are expressing obvious outward concern about your condition will create some distress in your kids. Be mindful of these issues when everyone wants to suddenly come lend a hand. 

Of course, your ability to follow this advice will depend on the type and severity of your problems. For most newly diagnosed parents, once you've recovered from your initial symptoms, the residual symptoms are primarily invisible, particularly fatigue. These symptoms can certainly interfere with normal parenting activities and will require some explanation to help avoid distress and behavioral changes in your children. The National MS Society has guides to help you discuss both your diagnosis and your symptoms with your children. The MSAA has books for you to read to your children (Mommy's Story, Daddy's Story) For young children, only discuss current symptoms that may alter your normal interactions with them. Avoid a large open ended discussion but make sure you answer any questions they have about MS. Keep answers brief and reassuring and ask if they understand. Since the kids are of widely different ages and maturity, have individual discussions geared to their maturity. 

I am sure there are many parents with MS reading these posts who may be able to provide more specific advice for you from their own experiences.

Good luck and keep in touch.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Center
University of California San Diego

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