Parenting and Illness: part 2

I recently wrote on the topic of how chronic illness has affected my parenting, which you might want to read first: here. While having a simple illness can have an effect on our ability to be "fully present" for our children, for chronically ill people, this is something that they must navigate daily. Chronic illness has a profound effect on those who suffer from it, as well as the family, including children, who live with the person.

Being All That We Can Be

Society continues to exert a tremendous amount of pressure on us to be the best parents that we can be and to live up to some sort of society created standards. We are bombarded by media advertisements on products that are "sure to make our children happy". Many magazines publish articles on how to be more effective as a parent. No matter what is going on in our personal lives, we're expected to meet these standards or face the consequences of having an unhappy child. However, it's not quite that simple. Children do not require products to be bought in order to ensure their happiness, just as each individual will have their own way to parent their child. Child development books speak of the need for parents to be responsive, genuinely caring, provide the essential needs (food, water, shelter, clothing) and to be unconditional in the love that is demonstrated to their child. All children act up sometimes, and it is not up to society to judge us as parents and label us defective if our children have a meltdown in a public place. This certainly does not mean that we are horrible parents. If we give our children the basic needs, it provides the foundation for happiness to arise from within the individual.

Some of us knew going into our pregnancy that we were chronically ill, others may have developed their chronic illness after the birth of their children. One thing is certain; chronic illness does impact on our ability to be all that we can be for our children.

The Depression Factor

Many chronically ill patients will experience some degree of depression during their journey with illness. It's difficult to be happy and upbeat when you experience pain and other symptoms that interfere with your quality of life to a great degree. Who wouldn't develop situational depression when told that everything they are physically experiencing is in their heads? Or that all they need to do is live a little? Who wouldn't be frustrated with the constant shuttling back and forth between doctors? Or when the promise of a new treatment fails? It's so easy to fall into the world of negativity when we deal with chronic illness. But we must look for the positives. What has this experience offered to you? What opportunities for learning more about yourself and your strength has it opened up? What life lessons are to be learned from this experience?

Many parenting books talk about the effect that stress and depression have on our ability to parent and on our children themselves. For example, children themselves may develop anxiety and feelings of sadness in reaction to a parent's depression. One of the parenting programs called "Kids have Stress too!" talks directly about the correlation between parental stress and children's anxiety and stress levels. There could be many ways that the stress in transferred but the important thing is to realize that it is a possibility and to try to "buffer" the effects of your personal depression and stress from children. Easier said than done.

The Guilt Factor

How can a chronically ill person not feel guilt over the fact that they will likely never be viewed as "the perfect mom" in our society? Many parenting articles have been written about the myth of the perfect parent, and how this effects our own expectations of our self. We cling to an image of the perfect mom; caring, happy, and ready to drop everything at the instant that our child approaches us. We want to be able to do it all; work, housework, and keep the needs of our family met. And yet the more we strive, the more these ideals seem to slip away from our grasp and we start to feel the guilt over our limitations. The guilt factor can lead towards us disciplining our children in a different way, such as allowing them to do something they shouldn't because we have been ill. Or needing to buy them something extra special to make up for what we couldn't do. During my son's last month of school, I had the opportunity to go on a field trip with his class to the zoo. Unfortunately, I've been on modified bedrest due to pregnancy complications for quite some time. I was still wracked with guilt over not being able to go with him on this trip. Yes, the guilt factor is a big one for us chronically ill parents.

Our Children

Regardless if your illness started before or after you have had children, your family has had to adjust to having a "sick" member. Our children have seen us at our worst, and sometimes for a rare amount of time at our best. They have witnessed our lows, our frustrations, and our sadness over not being able to cure ourselves. When our children are young, such as in infancy and toddlerhood, they do not understand that the parent is ill and is working hard to get better. When they do reach the age to understand that we have an illness, such as at the beginning of school-age, children develop a natural fear that something bad might happen to us. It's completely natural for children of the age 4-6 to worry about one of their parents dying. When my son witnessed me passing out for the first time, he has thought that I was dead. It's a terrifying thought for any child and can induce a lot of anxiety. Children may also begin to take on more of a parental role in the house by performing duties that would have previously been done by the ill individual. Older children can begin to understand and process what it means to be ill. while they may still have their worries, the fears of losing the parent (unless they have a terminal illness) are generally lessened. They have adjusted to the "new normal" and may even begin to develop resentment towards the ill parent for not being able to do everything. This resentment phase can switch on/off through the adolescent years.

Coping Strategies

It's important to have some strategies for coping that can buffer the negative effects that chronic illness may have within the family. Here's a few ideas, in no specific order;

1) Talk about your illness. You might as well address the elephant in the room. The reality of the situation is that you are ill and have certain special needs. It's hard to make younger children understand that you may need to take some amount of time during the day to address your special needs. But attempting to explain your illness(es) in a way that is age-appropriate can help to reduce the worry that there is something really wrong with you. For endometriosis, I have told my 5 year old that "mommy's cells got mixed up roadmaps and have decided to stick to places that shouldn't be which is why mommy is so sick". One day when he is older and knows more about the body, I can slowly introduce him to a more direct explanation. However, the important point is to have an honest and open conversation about what is going on with your health. This also allows the child the opportunity to keep an on-going discussion about his or her concerns about the situation.

2) If depression is an issue for you, seek medical help. You do not have to go through this alone. There are millions of people who live with chronic pain daily. Perhaps you just need someone to talk to about the situation or maybe you might need the help of anti-depressants, the fact is that help is out there for you to use if you feel it might be beneficial.

3) Re-examine your expectations of your self. Do you expect to live up to that image of the ideal mother? What would an ideal mother with your specific illness(es) look like? What are the most important things to accomplish today? Tomorrow? Next week? What is realistic for you to be able to do? Are there people in your life who you can delegate out other responsibilities? What can you do with your children?

4) Entering the search for the Positive. What has your limitations taught you about yourself? Is there something that you can still do well despite your illness(es)? Is there any lesson that you have learned from the various experiences? What would you tell someone who asked what the easiest part of having your illness is?

5) Sometimes love really is all you need. Children tend to thrive in situations where they feel accepted and loved. It's natural to lose our cool at times, especially when we are not feeling well at all, but everything seems to melt away when we use the three little words "I love you". I firmly believe that one of the reasons that hugs and kisses can make boo-boo's better is because they are given with love and good intent. It might not take the pain away but hearing I love you and saying I love you can help to make the day brighter for all.