Chronic illness isn’t something that we like to talk about, but every day people are diagnosed with an incurable illness or disease. Within my close circle of family and friends I have one person with Crohn’s Disease, and another with Chronic Berryliosis Disease. You may not have heard of either one of them, but both are incurable. Berryliosis is ultimately fatal, but the progression of the disease depends on the genetic predisposition of the patient.
Learning to care for and support family and friends with a chronic illness takes time and patience. When the patient is first diagnosed, everyone in the circle of family and friends gathers the wagons. If the initial diagnosis involves hospitalization, some will visit, others will cook food, and still others will offer to babysit or clean house. Everyone wants to help out in any way possible.
The problem with chronic illnesses is that, because they last over time, usually the extensive support system disappears. People get tired of erratic hospitalizations and days on end when the illness puts the patient down for the count for a week or more. Pain with Crohn’s and Berryliosis can be very severe. It is easy to become immune to the painful complaints of the patient, but is essential that you do not.
If you are a friend, family, or caregiver of a chronically ill person commit to that individual and yourself that you are willing to stick with them through thick and thin, in sickness and in health. The chronically ill need to know that you understand and that you care. At some point in the illness most patients begin to assume that anyone who sticks with them is doing so out of obligation. Find every way possible to assure the patient that you are standing beside them, going to doctors’ appointments, or spending nights in the hospital because you care. It is up to the caregiver and friends to help allay the concerns of the patient that they have become a burden.
Unless you have had a chronic illness yourself, you cannot imagine the mental battle that goes on in addition to the physical battle these individuals are facing. Sometimes, previously vital and healthy people are struck suddenly with the symptoms of their illness. They may be aggressive, hard workers, productive people in society. When they are taken out of the game, they suffer a huge blow to their sense of self-worth.
As a friend or family member, you can play an important role in two ways. You can affirm their worth verbally, via emails, or cards. You can’t tell them enough how important they are, and how valuable they are as a human being. You can also help build their self-worth by encouraging them to do the things they feel like doing. Don’t treat them like invalids, especially on a good day, if they feel like getting out and doing something, do it. Don’t wait. The next day, or even the next hour their physical stamina can wane.
Remember, when they get weak, can’t do things you want to do, or lack the spontaneity they once had, it is the illness that has caused the change. You are the healthy one, and must not take declined invitations personally. Because the chronic illnesses, by definition last over the long haul, you may have to remind yourself of this again and again. The best way to keep perspective is to remember that when someone is sick, life is no longer all about you. The one who is ill is engaged in the battle head-on. They are fighting to regain health and some sense of control in their life.
The best we can do is try to empathize. Having dealt with two close chronic illnesses, heart patients, cancer patients, and diabetic patients in a role as minister over the years, I have seen caregivers get aggravated, fed up, and get their feelings hurt. Nine times out of ten, once they had a chance to vent they ended their rant with, “But I really love him/her, and just want to take care of him/her.” They are then able to return to the bedside of their loved one.
Chronically ill people can be ornery at times because they do not feel well. Try to keep that in perspective. They may never thank you for being there. They may act as if you are no more than a picture on the wall. These things don’t matter. Your job is to stay close, and help in any way you can. You don’t have to create a co-dependency, or over dramatize the illness, just remember there are good days and bad.
One of the best things you can do for your chronically ill loved one is get their mind off their illness. Try to get them out to do things that make them happy. Provide positive music and books to lift their spirits when they are bed ridden. Often, they do not feel like sitting up reading, so consider getting books on tape. Audio books can be checked out at your local library.
The other thing you can do is make them laugh. You know what the person finds humorous, whether it is a comedian, movie genre, or just something silly. Do your best to incorporate humor in your dealings with the chronically ill person. After all, the Bible says, “Laughter is like medicine for the soul.” Scientific studies have proved that the physical activity of laughing and the endorphins release are both good for the health and mood of the patient. If you have to get outside your comfort zone and do something foolish, just do it.
Make sure that you have some time for yourself. This will keep you from getting overly fatigued building up resentment toward the patient. Some people have the gift of patience, and never get tired of the rigors of caring for the sick. Others find themselves resenting the constant time and energy it takes to care for their loved one. Personally, I try to keep aggravated care givers away from the patient. A bad attitude from anyone toward the patient will only contribute to feelings of worthlessness, self-loathing, and make them feel like they are a burden to you and everyone else.
The symptoms of the illness must be tended to by medical professionals. However, there is a lot you can do to contribute to the comfort, and especially the attitude of the patient. Stay positive. Stay close-by, and pray. Remind the patient and yourself, that there is always hope.