Chronic Illness and Your Family

If you’ve been diagnosed with a chronic illness, you know your life has forever changed. You can never be the person you were before your diagnosis. Your life will change the moment you are diagnosed, whether you decide to acknowledge that illness or you decide to ignore it. Ignoring your illness will cause a snowball effect; an avalanche of preventable problems, sometimes including premature death, will befall you if you ignore your illness. Acknowledgment brings greif.

Grief is the most complicated of human emotions, even more so than love. In grief, one feels, denial,anger, fear, the need to bargain with a higher power,sadness and depression, and finally, acceptance. These are the textbook stages of greif. Many people do not feel all the emotions outlined in that definition. There is no period that is usual for each and every stage. Grief is very individual, very personal. Each of us experiences it differently, just as we experience each chronic illness differently than the next person with the same illness. Support groups, individual counseling, and even antidepressant medications are options to help us work through these things. There is always a turning inward of the person who is diagnosed with a chronic illness. We go through our everyday lives in a fog, taking care of our children and/or our parents, going through the motions of our everyday lives. What else can we do? The world will not stop just because we are ill. The world will not change its ways for us, accomodate us and our newfound needs and wants. No, the world moves on, oblivious, impervious to us. As we turn our thoughts and strength inward in order to survive and adapt to this newfound way of our being, our partners and loved ones must, also. Though there is much said about the greif experienced by the newly diagnosed, little is said of the grief and fear experienced by their partners and loved ones.

As we turn inward, frantically struggling with a plethora of new information, new feelings, new medications with odd effects on us, it is easy to overlook the fact that our families are grieving, too. They are grieving for the loss of the person they once knew, and for the loss of their life together as they knew it to be. Where before a wife could get into a car and drive herself wherever she needed to go, now she must depend on her partner to drive her everywhere.She must ask what time it is, because she cannot see the clock on the wall. She needs to rest in the middle of the day, leaving him with the chores she used to do. Where one day, she was able to chase the children everywhere, now she needs help. Where she once was young and did all the things a young woman may do, now she appears older, tired, pale. She may need help to get around, such as a cane or crutches. So now her husband or boyfriend, her children and family, have seen her age twenty years, in the span of only a few months. They have stayed the same, and it is difficult for them to accept that she has not stayed the same. “She doesn”t look sick,’ they think,’ so why can’t she run with the kids, clean the house, drive herself to the doctor? Why am I saddled with her this way? I didn’t sign up for this. She was healthy when we got married.’ Partners sometimes feel cheated, because illness is never what anyone plans for; it is seen as something to be pitied, or what happens to old people.

Fights will erupt, partners will be short and sometimes harsh with one another. The patient will wonder why they can’t make their partner understand that they are tired, or weak, or unable to do many things that they took for granted before they were diagnosed. The spouse will wonder why they can’t just”cowboy up” and get things done. They may accuse the patient of being lazy, of courting sympathy, of feeling sorry for themselves. The children of a chronically ill patient suddenly must grow up, taking on more responsibility for chores and for themselves than most of thier peers. They may be edgy and restless, and become defiant. They may get into trouble in school, where before they were a model student. They may become a model student, to try to prove to themselves and others that there is nothing wrong.

The families of chronically ill patients grieve as much as the patient. It is often hard for outsiders to see that grief. Sometimes, it is hard for the patients and families themselves to see that grief, so caught up are they in endless rounds of appointments, trips to the pharmacy, and seeing to their own needs. If we wish for our families to survive such trying times, we must communicate. Communication is key, and often the hardest task for any of us to complete, when we are not sure how to put our feelings into words to ourselves, much less to another person.

If you have been diagnosed with a chronic illness, your life will indeed change.Your family’s lives will change, also. Give yourself and each other time to adjust to these new feelings, to learn to care for these new needs. Communicate with yourselves, and with your physicians, to help ease the greif process for you and your family.Don’t be afraid to seek outside help to deal with these emotions. Your primary care doctor can help point you in the right direction. Grief is a process, and there are many differnt ways to deal with it, and to ease the stress associated with it for everyone. Don’t be afraid to grieve. Don’t let it take your life over, and don’t let it drive your family away when you all need each other most.