Speaking with your Kids about Your Chronic Illness

This week's question is near and dear to my heart.  Two people who are very close to me but don't know each other, coincidentally asked me the same question.  They suffer from two different chronic, neurological diseases.  I not only know both ladies personally but I,  like them, suffer from a chronic neurological disease.  I suffer from Multiple Sclerosis (MS).  MS is a neurological disease that can be severely debilitating.  Symptoms vary from individual to individual and can range from fatigue, vertigo and balance issues, tingling in the extremities, mild to moderate blindness, cognitive dysfunctions and can lead to paralysis among other serious symptoms. 

My cousin,  recently diagnosed with Reflex Sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome (CRPS), is a much lesser known neurological disease but equally debilitating.  My cousin describes RSD in this way: "I feel as if I am in a hot suit that is burning through to my bones and at the same time there are sharp pains in my legs.  My toes, heels and back of my foot are tingling, numb and swollen.  The same feeling is in my arms and hands.  It is hard for me to make a fist without pain.  The more pain I feel, the more tired I get.  I forget everything.  The other day, while in a hardware store, I could not remember the color of my kitchen."

All three of us, are mothers of young children.  All of us are ambulatory and all of us are described as "but you look so good".  While it seems rewarding that we are walking around and functioning, depending on the day we can find it even difficult to move.  Diseases like MS and RSD have symptoms that can be invisible.  To an outsider we look good, even healthy, though we can be in excrutiating pain and discomfort.  This can make it difficult to explain to children and adults that we do suffer and sometimes just can't do our normal tasks or be exactly the same before we were diagnosed. 

This week's question:

"How do we tell our kids we have a chronic illness (especially if we don't look it), what do we say and when do we say it?"

Be Honest

According to "Someone You Know Has MS, A Book for Families",  from the MS Society: "children are far less fragile than you think, and are more able to accept painful realities than we generally assume.  Parents often try to protect their children by hiding painful issues, but open and honest communication among family members is valuable and important." 

Get Resources

Paula Sussman, a counselor at the MS Society suggests making use of great tools such as videos, CDs and pamphlets.  The MS society developed a newsletter, "Keep S'myelin" for children who have parents who have MS.  The tools may not work for the age of your child or for the way your disease has affected you, but they are important resources to give you the language that is necessary to make our children aware that you are not well.  Call your local chapter of your society, agency or support network and ask them how you can talk to your child about your illness.  If they don't have anything in place this may be a great opportunity for you to help develop tools with other parents!

Choose an Opportune Time to Disclose

Depending on the age of your child and how much your symptoms are affecting you and your child, think about when do they really need to know.  Young children may only need to understand that  "Sometimes mommy does not feel well.  When I don't feel well I need to..."  As children get older you can reveal more specifics about how the disease affects you.  

According to a Chronic Illness Coach, Tom Robinson, " parents can choose a moment when they experience a noticeable symptom, such as a tremor, dropping something, not being able to go somewhere because of fatigue, etc. parents can say, 'Susie, I wasn't sure if you could understand before, but you've grown up a lot so I want to tell you why I sometimes drop things (or whatever the symptom is).'  Parents can explain the illness in a way the child can understand it."  

Read Your Kids Reactions

Give only what your children can handle.  Children process information in their own way and in their own time.  After disclosing you have a chronic illness children may not want to talk anymore, change the subject, ask lots of questions, cry or say "okay" in an unassuming tone,  Let them be in control.  Allow children to react in the way they need to. If they ask questions go further using appropriate language.   Some children will revisit conversations days, weeks or months later when they are ready to discuss.  Allow them to process when and how they need.

Reaffirm to your children that when you "don't feel well you are not angry".

Explain to your kids even mom and dads can be grumpy or cranky, especially when they are tired or not feeling well.  It might help to have a plan for the days that you are having trouble. Create a box that is full of simple games, puzzles and cards that your child can do on their own. Keep these activities reserved for those times that you need your extra rest.

Get Your Child Involved

Every year, since my son was born, he and my other children participate in the MS Walk.  The day has a celebratory feel.  We have a team full of family and friends, I reunite with people who I usually only see at the Walk, there is music, food and tons of freebies!  My son looks forward to the event and has even put a picture of the walk on a timeline poster of his life, for a school project.  By the time he was six, he was told that MS is a disease and he was walking to help individuals who have it.  Now that he is seven, I am gearing up once we begin preparation for this year's walk to tell him that I have the disease.  

Anticipate questions:

When I disclose this to my son, I imagine he will ask questions, such as  "Will you die?" or if I "will end up in a wheelchair or use a cane?"  I have been giving this a lot of thought.  I am practicing an answer that goes some thing like this:  MS will not end my life any sooner than it is supposed to end naturally (he fully understands already that everything dies).  As for the wheelchair and the cane, my answer:  "I don't know.  What I do know is that I am doing everything that I can to take care of myself and try to keep myself healthy.  I listen to my doctors and do what I am supposed to do."

You Are Not Alone:

Talk with other individuals who have chronic illness about how to approach your children. Request resources from your various agencies, join a network, create a parents support group, participate in webinars, join phone conferences and enlist help from counselors, therapists and  coaches like Tom Robinson.

I would love to hear how you disclose your chronic illness to your kids!