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2007-08-07 issue:

The abuse in illness

How not to support a person with an illness

by Faye Nyce

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A diagnosis of terminal illness is a severe blow to anyone and his or her family. Life had been going on at a normal pace—working, raising children, volunteering—when, without noticeable warning, one of us was hit with a “ton of bricks.” Life was suddenly confusingly unreal for all of us. It hit us in the solar plexus.

When friends, family, acquaintances, as well as people one barely knows, learn of the illness, everyone wants to help. That is appreciated. However, one of the tragedies of being sick with a difficult disease is the large amount of books, opinions and potions that are touted by others who feel they know “just the right thing.” Everyone wants to “make it all better.” Some people have the right touch and know how to do this, but others, though just as well-meaning, can actually make things worse for the patient. At one point, the ill patient’s friend gave her a book. The patient asked me to read the book and give her my opinion. She did not have the time or energy to read through this type of book.

Here are some “don’ts” in our situation:

1. Don’t try to tell the patient and/or his or her family anything about someone else who had the same disease and died. This is the patient’s own journey and she or he needs to be given comforting, sensitive words. It is difficult for me to believe that someone can see him/herself as well meaning when they give a detailed list to the patient or family member of all the organs where this disease can/will spread and how horrible it will all be before “it is over.”

2. Squash your need to give the patient advice on who to see, where to go for help and what medications/ herbal remedies to take. The patient has his/her own team of doctors who are doing what is best in this particular circumstance. Don’t even bother to tell them what you read on the Internet about a similar situation.

3. Do not tell the patient that this illness will bring him or her closer to the Lord. It takes a lot of restraint for the patient not to then wish the illness on the bearer of this message so that this person can also be closer to the Lord. This is another case where the patient has to be the polite one—instead of the other way around.

4. Some patients cannot handle a phone call that concludes with prayer over the phone. It is tiring for the patient to have to have a phone conversation and then need to hang on for a long, pious prayer. Again, the patient feels he or she has to be gracious and listen through this prayer, which may even come from a different theological bent than the patient experiences. It is important for the patient to know that people are praying for her or him and he or she is thankful for those prayers, but do it on your own time—not over the phone with the patient.

5. Often it is not wise to visit. Even though we may know this to be true, many of us feel that surely “I” am a close enough friend that it is OK for “me” to visit. Visits can be very tiring, and even when people say it will be a short visit, it often becomes too long. Try to restrain yourself in the visits and phone calls. Sending kind, sensitive notes is much better. The patient can read these while resting and can save them to read over and over when he or she needs the boost your note can bring. Especially do not bring little children—even the best of children are often too noisy and too much into things and can cause anxiety. Please do not make it necessary for the patient to have to clean things up after you leave, thinking you have done your good deed by visiting. If you do visit, a 20-minute visit is more than enough. If you are from a distance, two hours is tops. Remember you are abusing the patient’s energy reserve by staying too long.

6. Those of us who have been patients would like others to be aware that we are still equal, functioning human beings, even after our lives have turned topsy-turvy. Please remember that the patient is every bit as equal as those walking around. If the person is sitting in a treatment chair, has an IV hooked up, is in a hospital gown, has lost her or his hair, or whatever the case may be, try to think before you speak. Don’t necessarily speak for them if they can speak for themselves or talk in third person about the patient or treat them in any way that they are somehow made to feel less of a person. Don’t have a little meeting with others who came to visit when the patient is sitting or lying right there perfectly able to hear or sense what is going on. Remember that this patient is a whole person, no matter what has happened. But for the grace of God, it could be you sitting there in the same predicament, and you would want to be treated with kindness and equality.

One of the most devastating things to do is to approach a person who is ill with an agenda of “why not you?”—that “in other, less-developed countries, people are being healed miraculously by the Lord, and why doesn’t it happen in this country?” It can make the ill person feel blamed for not being spiritual enough, having enough faith or somehow standing in the way of healing. Keep in mind that asking personal questions such as, Have you been anointed? is another example of interference and thus abuse.

The ill person already has enough pain and sorrow without being told of other people’s journeys. Why does the ill person have to be unloaded upon by another person’s expectations. And above all, don’t tell the ill person about someone who died, but it all turned out well because the surviving spouse soon found someone else “good” and got married again. This is the height of abuse.

Some dos: Besides kind, sensitive notes sent to the patient, another kind gesture is sending a bouquet. Prepared meals are a boon for the patient and the entire family. Just be sure you are fixing foods allowed in the patient’s diet. And if the patient wishes, cleaning the house can be helpful. However, keep yourself apprised of any rooms the patient doesn’t want you to clean. Again, the patient should have that right to privacy. Helping with yard work can be a real blessing. If there are children in the family, it can be helpful to take them for the day once in a while and/or include them in special activities. Continuing to be there over the long haul with patients and their families is a priceless gift.

All people need to feel loved but especially so when illness is so draining. We are here to help each other, and these are just some of the ways that feel right.

Faye Nyce is a member of Landisville Mennonite Church, Lancaster, Pa.

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