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April 19, 2014 / 19 Nisan, 5774
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You’re So Strong!

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(Names have been changed)

Loss is a personal and monumental event. It is different for everyone who experiences it. The loss of a child cannot be compared to the loss of a parent, though the pain may be as torturous in both cases. Whatever loss we experience can never be fully understood by anyone who has not endured a similar loss. Even a person who may share the same situation, the same loss, will experience it differently.

People grieve in their own way and in their own time, and for the most part, we do not have the words that will bring comfort. All we can really do to help, to console, is to allow them to grieve. We must accept the depth of their loss, feel the pain of their loss, and give them the affection and support they need to get through it.

When a well spouse is facing the deterioration of a partner, s/he has the same needs as someone who has suffered a death. The sense of loss and fear is so great, yet it can never be fully understood by someone outside the experience. It offers no solace to tell the well spouse that all will be fine and things will get better when everyone knows it isn’t so. The well spouse is in a situation where she needs to accept and adjust. She needs someone to empathize and help her accept reality instead of encouraging her to hide from it.

She needs someone to cry with, talk with, and hold her through the pain. She needs to be able to let down that mask, even for a little, to be able to go on.

The more we shower well spouses with platitudes, the more we give them the message that it is unacceptable for them to share their concerns and fears.

“You’re so strong” is the one phrase most well spouses tell me they hate to hear. They neither are nor want to be strong. They would prefer to share the burden, to talk about it, and have someone acknowledge their feelings. Telling them they are “so strong” really means, “Don’t burden me with your vulnerability or your pain. Just be strong and cope.”

Chana’s husband’s chronic illness was taking a sharp nosedive. He was deteriorating so quickly that she began to fear each new day. Two years ago, he was working full time; today, he could no longer put on his own coat, pour himself a drink, or even hold a pen. He had first been put on sick leave and then on long term disability. The doctors told Chana and her husband that the deterioration would probably continue, but they weren’t sure how fast it would be or how far reaching. Chana was trying to cope with the news. She knew she might have to face the decision of a care facility some time soon if the deterioration didn’t slow down or plateau.

Slowly, she tried to get her brain and her heart to adjust to this new phase of her life. When she tried discussing some of her concerns with a friend, the friend interjected, “You’ll see, next year he’ll be back at work! Stop torturing yourself.” Chana kept her concerns to herself after that. She was alone with her fears and her pain.

Linda’s husband was hospitalized. The progress he was making suddenly stopped. He began to deteriorate, getting recurring multiple infections. The doctor in charge of his case was asked to consult, but it had been over two weeks and he had not found the time to look in on his patient. Linda was beside herself with worry and fear. She kept trying to keep her husband’s spirits up, but her emotional energy was sapped. She could barely make it to the hospital every day.

When she shared what was going on with a friend, the friend began to scream at her. “Now you listen to me,” she yelled. “You go up to his office and tell Dr. X to get himself down here. And you don’t leave his office till he does. If you don’t you’re a fool.”

Dena’s husband was also following the downward spiral of chronic illness. His ability to process information was slowing down. Sometimes Dena had to repeat herself several times before he understood what she was trying to say. His physical condition was also worsening. Infections were more frequent and loss of bladder control was becoming common.

When Dena started to share a bit of her feelings with a friend, the friend just held her hand and let her talk. The friend hugged her as she began to cry. Instead of platitudes or advice, Dena’s friend just said, “I feel so bad for what you are going through. The pain and fear you feel must be terrible.”

Most well spouses have learned to wear a mask. They have learned to hide their emotions and concerns. We have taught them to do this through our desire to help with unsolicited, imposed advice and unrealistic platitudes. That is why they look as if they are “so strong.”

But, it is not strength we are seeing. What we are seeing is the temporary burial of those feelings that need to be expressed freely and openly without fear of censure. We force them to pretend that all is well or at least not affecting them.

Let us learn, instead, to give them what they really need. Let us learn to patiently withhold our comments and advice. Instead, let us reach out and hold their hand. Let them talk and cry. In doing so, we shall help them cope. Let us reach out to help comfort the buried pain within.

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When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

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