Monday, January 19, 2015

Coping with Chronic Illness: Things I have learned on my Quest for a more Peaceful Life.

I wrote this back in January of 2008. Our local hematologist at the time, like this so much that he gave copies of this article to his students.

Coping with Chronic Illness:Things I have learned on my Quest for a more Peaceful Life

Coping with chronic illness is a challenge for the entire family. While it affects each member of the family differently, no one is spared. Each family member has different needs. Needs, that if not addressed, can throw the entire family into chaos. Using active coping strategies can decrease stress and improve the psychological health of every member of the household. As a parent of two children with Shwachman-Diamond Syndrome (SDS) and secondary mitochondrial disease, I have learned that there are many things that I can do to relieve stress and help the entire family cope. Limiting the effect of the stress from medical appointments and procedures will enhance the well-being of each member of the family.

Parents Must Take Care of Themselves

In order to be effective parents, we must first be able to understand and cope with the diagnosis ourselves. Before we can help our children, we must be able to help ourselves. The outlets we find and the tools we use are essential to living a full life amid the daily medical routines. Once you have taken care of your child's medical needs and cared for your other children, you must also take care of yourself. I cannot emphasize this point enough. This includes taking time to relax or doing something you enjoy.

If you, as a parent, become ill or unable to care for your child, who will care for your child? Do not feel guilty about doing things that make you feel better and enhance your well-being. Take a friend up on the offer to watxh the kids so you can grab a cup of coffee or relax. So many times, I have been guilty of thinking, "Well, I could use a small break from dealing with medical bills, insurance and doctors, but I don't want to use up all of my favors now. What if my child goes to transplant, what will I do then? Who will help in the future if I take my friend up on this offer now?" I finally started taking my friends up on their offers to help, and I am a better parent for it. We do not know what the future holds for any one of us and we need to trust that our friends understand our struggles. We need to take the time to recharge in the here-and-now so that we are able to care for our family in an effective way. These small breaks have gone a long way in improving my ability to cope with the daily medical challenges of SDS and mito.

Lastly, do not be afraid to educate yourself about your child's illness. Research and ask your child's doctors questions until you fully understand all aspects of the disease. As a parent, you need to have a good understanding of the disease not only to make important treatment decisions, but this knowledge will enable you to help your child cope, as well.

Try to Maintain Routines as Much as Possible

First, we must realize that our normal may not be normal for any other family. It can be difficult to maintain family routines amid appointments, hospital stays and home treatments. The urge to give our children the perfect "normal" life at all cost can sometimes drive us to make unhealthy choices. Do not be afraid to say "No."  If your children miss a play date, a birthday party or an activity at school, the world will not come to an end. If you are not able to volunteer at church or school, the world will not stop spinning. Adding extra jobs and extra activities creates extra stress that may not be in the best interest of creating peace in the household. 

I have learned that everyone misses out on activities at one time or another. These challenges can be a good learning tool and character builder for children. These unfortunate events can make us stronger and more compassionate. I have seen many positive character traits develop in all three of my boys over the years that we have been dealing with our medical challenges. We not only try in vain to give our children the perfect "normal" life, we sometimes try to achieve perfection in all facets of our lives. One thing living with chronic illness has taught me is that we are far from living in that elusive land we call "perfect". On noghts we have to hook one of the boys up to their medication pump, you might find that our kitchen looks like a bomb exploded in the sink! When staying up all night with a sick child or spending time at the hospital, I'm doing well to get the clothes washed....forget folding! Clean clothes are about as close to perfect as I can get. I have learned to live the saying: Don't sweat the small stuff.

Connect with Others 

Do not be afraid to join a support group. You are not weak because you reach our for support from others. We all have a need to be understood. Sometimes, the best place to find the understanding support you need is among a group of families who are battling the same challenges. Sharing experiences and information with these families can be cathartic, energizing and enhance your well-being. I am stronger because of the friendships I have developed through the SDS support group. I no longer feel as if our family is battling SDS alone and I have found a place here I am free to discuss all aspects of the disease and how it affects me and my family.  My children have also developed friendships with the other SDS children they have met through the support group. I have seen how knowing others with Shwachman-Diamond Syndrome has helped them feel less alone as they cope with the effects of their illness.

Take Care of Your Spiritual Needs

In the midst of taking care of our physical bodies and those of our children, we can forget that we have spiritual needs. It can be difficult to find time to reflect or to pray amid a normal our normal routine.  The added stress of chronic illness can make it seem as if having a spiritual life is an unattainable reality. Taking the time you need to develop your spiritual life can have a great effect on your ability to cope with adversity. If you are having trouble, do not be afriad to contact your pastor for counseling and spiritual advice. When we effectively balance taking care of our spiritual needs and our physical bosied, we can achieve harmony and find peace in the midst of the chaos.

In ending, I want to point out that there are o right or wrong answers. We all cope with stress differently and we must do what is best for ourselves and our families. Take the time to find active coping strategies that relieve stress and enhance well-being. 

SDS Support Group on Facebook:

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