Kids View of Adults and Chronic Illness

When we are in the throes of battling chronic illness, as adults, we have specific information and our unique perspective of what we are facing each day (whether we are the one with the health challenges, or, the adult caregiver such as a spouse, parent, close friend, or family member).  Since most chronic illnesses last way beyond many months and often, even years, we learn how to look at our lives with a different viewpoint then most people who are generally healthy.

When we experience a flare-up…and have to excuse ourselves...children only notice that we have left…They do not understand the “whys.”

The kids in our lives; from our neighbors' and friends' children, to nieces and nephews, and, our own sons and daughters, tend to have a different view of our personal battle against chronic disease. Of course, the age of a child has a lot to do with how they see our situation. During the earlier stages of confronting several autoimmune conditions, I left my personal training business to write part-time from our home and speak at a limited number of venues each year. My being home most of the time allowed us to host frequent visitors for overnight stays. It was hard to tell that we were a “one child” family because our daughter often had friends over and nieces and nephews would stay over during summer months and holidays. For me and countless others, chronic illness was an unwelcome "visitor." It didn't make one grand entrance into our lives, but instead, began with short visits that eventually become more regular and, the stays become longer until it had finally moved in full-time! And those earlier phases of illness don’t usually show visibly – hence, the term, “invisible illness.”  So, when we experience a flare-up or a cycle of symptoms and have to excuse ourselves unexpectantly from our "welcomed visitors," children only notice that we have left. They often do not understand the “whys.”

My niece, like most young children had compartmentalized complex chronic illness into terms she understood; “are you’re ouwees better?” And, if so, “Can you come and play?”

On one such occasion, we had different family members visiting over a Thanksgiving holiday. After helping to get the dinner underway in the kitchen that afternoon, I was having a lot of inflammatory pain in my low back, shoulders, and upper legs. I excused myself to go upstairs and take an anti-inflammatory medication and rest for a short while. After about 20 minutes or so, my bedroom door opened ever so slightly and a small person walked quietly toward my bedside. One of my nieces, who was about 4 at the time, placed both little hands and her chin over the side of my bed and said very quietly, “Are you awake Na Na?” (the nickname that had been given me years before, by my eldest niece when she was about 11 months old and had trouble pronouncing the “J” and other letters in my name, had been adopted by every child after her). Smiling, I said, “Yes.” This little one next wanted to know, “are you still sick Na Na?” Only understanding her reference point for illness which were things like tummy aches, sore throats and fevers, ear infections, and other typical childhood conditions; temporary episodes that were over almost as quickly as they developed. “If you’re ouwees are better can you come back downstairs and be with us?” My niece, like most young children had compartmentalized complex chronic illness into terms she understood; “are you’re ouwees better?” And, if so, “Can you come and play?”

In the complexity of all of this, sometimes a kid’s simple viewpoint of what we are going through can actually be welcome.

It is common for people with chronic illness to have more than one condition. In fact, most people with autoimmune diseases eventually develop secondary illnesses. For instance, many people with connective tissue diseases will often end up with another diagnosis such as lupus, Sjogrens, Reynaud’s, and/or chronic fatigue, And, where there is chronic inflammation, there is chronic pain, and where there is chronic pain, there is often depression. The depression is not only from circumstances or psychological (which can often be effectively dealt with through counseling, meditation/prayer, and/or, support groups), but it can also be chemical or physiological, as a result of serotonin levels or other natural mood elevating hormones being suppressed by pain (which can be helped by an anti-depressant or anti-anxiety medications). In the complexity of all of this, sometimes a kid’s simple viewpoint of what we are going through can actually be welcome.

I vaguely remember being taken on the stretcher from the house to the ambulance, but apparently there had been quite a few neighbors looking on.

A few years after that Thanksgiving interaction with my niece, we had moved to another town to help one of my sisters through a bout with cancer. Unfortunately, my health had worsened as I had developed several more conditions that had truly begun to wreak havoc on our lives. I had signed up to take my sister to special appointments (sometimes an hour or two from where we lived) and to every chemotherapy session, and then to the pharmacy and usually the video store to get movies to watch as she rested through the week-end.  During one of these weeks, I had a lupus flare-up and became so ill during my sister’s chemo session that she ended up driving us back home. By early the next morning, I was losing consciousness and I vaguely remember being taken on the stretcher from the house to the ambulance, but apparently there had been quite a few neighbors looking on.

…he began with, “Is your wife sick?” (To which my husband said, “Yes.”) Then he asked, “Will she die?” (“No.”) “Were you sad?” (“Yes.”) “Did You Cry?” (“No.”)… then with a nod of his head, the interview was over…

While I was in the hospital, my husband had an unexpected visit. When he opened the door, our neighbor’s son, Theo (who was about 9 years old), had apparently been appointed by a half dozen other kids on the block to retrieve pertinent information regarding my ambulance trip to the hospital. When William opened the door, Theo wasted no time with formalities. With the seriousness of a wartime journalist, he began with, “Is your wife sick?” (To which my husband said, “Yes.”) Then he asked, “Will she die?” (“No.”) “Were you sad?” (“Yes.”) “Did You Cry?” (“No.”) And then with a nod of his head, the interview was over and Theo was heading toward the semi-circle of kids standing with their bikes at our front curb, to deliver the vital news.

…it’s important to be frank with them… to have a deeper sense of gratitude for their own health and ability, and, the important feeling of compassion…

Of course as kids get older, they are capable of a deeper level of understanding about the adults in their lives who are battling chronic illness. And, it’s important to be frank with them (as well as with other adults looking on) about what we truly going through. This helps them to have a deeper sense of gratitude for their own health and ability, and, the important feeling of compassion and hopefully, the inspiration to help those who are hurting. 

But we, who are going through the throes of chronic pain and illness, can also be buoyed by those simple child-like viewpoints at times. When I’m in the middle of a flare-up, the intensity of the moment can be lightened considerably as I think of those “kid perspectives” and I remember when my “ouwees are gone,” I can go and play.

~ Cry Some, Laugh More, Pray (& Play) Often ~ Jamey Lacy July