Should I Tell My Child About My Chronic Medical Condition?

The Robin Wood Johnson Foundation, citing research by :Shin-Yi Wu and Anthony Green, Anthony, writes as follows: “In 2000, 125 million Americans had one or more chronic conditions. This number is projected to increase by more than one percent each year through 2030. Between 2000 and 2030 the number of Americans with chronic conditions will increase by 37 percent, an increase of 46 million people.” So, the problem of a parenting wondering how to communicate with a child about his or her chronic medical condition is a common one.

Experienced child psychologists know that once you’ve seen one family you’ve seen one family. For this reason,there is no counsel or set of procedures that can be universally applied. However, it is possible to provide some general guidelines by addressing eight common questions.

Is it possible to hide less visible chronic illnesses from our kids?

Probably not. Most of us tend to show our vulnerabilities more when we’re stressed; smokers tend to smoke more; people in troubled marriages argue more; people inclined towards impatience yell more, etc. A young child, sensing stress in a parent, can become fairly upset and believe that he is at fault unless a parent provides some degree of clarity.

Should I lie to my child about what is going on in order to protect her?

We parents love our kids so much that it can make us crazy (i.e., we’re parent-lunatics). So, the motivation to give false assurances is certainly understandable. However, it would generally be a mistake to assert something we do not believe. While doing this in the short run can seem humane, it can damage our credibility in the long run. And, as is the case in adult relationships, credibility can be a difficult thing to recapture. Moreover, kids can usually tell when something is wrong.

What should I tell my child about medical condition?

The younger or the more psychologically vulnerable a childis, the more selective I might be in what I share. The older a child, and the more that he is thriving, the more open I might be. A central parental goal is to help my child to learn how to cope well with adversity. It’s useful for kids, through the course of development, and in doses that they can handle, to be exposed to a wide variety of stresses so that they can learn effective coping strategies. Yet we parent-lunatics, because we can’t bear to see our kids hurting, sometimes deprive them of such valuable learning opportunities. Then, when they’re on their own, they may experience a diminished ability to respond to multiple kinds of stress and challenges (e.g., many freshmen arrive on college campuses with a compromised capacity to make effective decisions when stressed).

Can you give me an example of what I might say to a younger or a more vulnerable child regarding my medical problems?

Let’s say that you’ve been diagnosed with an illness that'sprogressive and may leave you wheelchair bound in the future. I probably would not tell an eight year old about that possibility, no matter how likely. I would, however, tell that child about the illness, because you’re experiencing symptoms, or someone else might let it slip or something could be overheard. It’s like sex education: you want as much information coming from you as possible. However, a child is like a bridge that’s still being built. How much weight he can handle changes over time (i.e., we don’t want to take a caravan of heavy trucks across a bridge that’s not completed if we can avoid it). If there are serious issues that would significantly stress or frighten a young child, and which are not apparent, I probably would not share that information until I have to.

What would you say to a healthy, older teenager?

I might say to the teen, “I need to tell you something troubling. I've been diagnosed with multiple sclerosis. I’m not quite sure what’s going to happen and what kinds of changes we might have to go through together. I’m somewhat worried and sad about all of this, but I’m also confident in my abilities and our abilities as a family. I just thought that you’re old enough to hear about this straight up.” Such disclosures can promote closeness with a teen and affirm that you recognize her growing maturity. Then, there is the follow up opportunity to learn together about the illness and to model effective coping in the face of adversity.

I can’t tell you the number of times, in my practice, that a teen has expressed surprise to learn that her parent was previously dumped by a significant other (this happens in the context of the teen being devastated by such a loss). We’re often not used to telling our kids about our vulnerabilities and failings, even though doing so can help them in many ways (for my humorous blog entry on this topic click here).

What do I do about my kid’s distress?

I’d provide empathy. This news sucks. It makes sense that he or she would be upset. Only after there has been a full vetting of your child’s thoughts and feelings would I offer any truthful reassurances. For related strategies see my blog entry Helping Children Cope with Scary News.

Should I educate my child about my illness?

Within the parameters established above, certainly. There are books for children regarding most chronic medical conditions. There are also support associations for most conditions as well. So, I’d look to your relevant support association for high quality resources.

What do I do about the shame and guilt that I feel that I’m not able to give my kids as much of myself as I could in the past?

I’d suggest trying to redirect the mental energy you are putting into guilt and shame into thinking through the following formula: crisis = pain + opportunity; a related corollary is that as the pain rises so too usually does the opportunity. Let’s say you can’t go jogging with your daughter like you used to or want to. That is painful. Period. And, that pain needs to be given its due. However, once that pain is respected and experienced look for the opportunity that is always present; as one poet put it, pain is like a dragon guarding treasure. For instance, maybe you develop a deeper appreciation of the value of spending one-on-one time with your daughter and establish a weekly chess game with her. Maybe you can't say yes to your son’s invitation to camp out but you can create a fun camping experience in your family room.

In closing I can share that our research makes it clear that one of the most important things our kids need from us is undivided and positive attention. Maybe how you provide this attention to your child needs to shift because of a chronic medical condition but it certainly needn’t stop, at least as long as your brain is working well enough to allow you to manifest love, creativity, flexibility, presence and persistence.

Dr. David Palmiter is a psychologist and author of Working Parents, Thriving Families: 10 Strategies That Make a Difference. His blg can be found at www.hecticparents.com while his Twitter feed is at www.hecticparenting.com

Your host for this article is J. Lamar Freed, Psy.D., a psychologist living with MS. Dr. Freed has articles on Multiple Sclerosis and mental health, including articles on Depression, Anxiety, Fatigue and more. You can link directly to these articles here.