Taken from "Sick and tired of being sick and tired" by Dr. Paul Donaghue and Dr. Mary Siegal with extra information and feelings from Monique Marie

Where need is most pronounced, feelings are more intense. In the loneliness of pain and sickness, we need the comfort of care, sympathy, and understanding. We want the comfort of care from those who know us best—our spouses, family, and friends. When we are met instead with impatience and distrust, we are shattered. We withdrawal like wounded animals. Or we attack those who are hurting us. Spouses and family members of the sick are often overwhelmed by their own needs and feelings. Their needs for intimacy, companionship, and happiness are threatened by complaints of sickness. Their feelings of fear, disappointment, confusion, hurt, and anger are complicated by feelings of guilt for being well and for having needs that the loved one is often not able to meet.

Clashing needs and perceptions frequently lead to painful conflict between the person with ICI and his/her family and friends. To family and friends the patient often looks “just fine”. Often, even in the worst exacerbations, the illness is as we have named it—invisible. As the patient herself can be in doubt as to the realness of the illness, so can the ones who love her most. In addition, family members like the sufferers themselves, practice denial. They would often prefer to think the problem is psychological rather then admit their daughter, son, or spouse has a major illness. Their need is for her to be well; their perceptions or misperceptions are frequently shaped by that need. Such needs and perceptions can lead to behaviors that are annoying to the patient.

People with ICI need to be trusted especially by those closest to them. But it is difficult to trust another person. We want evidence. If out child says he is sick n a school day, we look for outward signs of illness: a temperature or some coughing or vomiting. If someone asks for a donation, we want proof that the cause is worthwhile. When people say that they love us, we think, don’t talk of love, show me.

Despite looking “fine”, the patient may be suffering greatly. Someone needing her to play, to make love, to work, to contribute has to trust that, despite appearances, she is not able. Such trust is difficult when one’s perceptions have to be discounted; it is even more difficult when one’s needs have to be denied. Disappointment, hurt, and anger strain the quality of trust. Realizing she is going to be misunderstood or that behaviors might be expected that she cannot perform, the patient may tend to exaggerate her symptoms around those she loves. For example, is she is suffering fatigue, she might slump her shoulders or walk very slow or talk in a tired, strained way. For these efforts she might be rewarded with lowered expectations, but more often her behaviors will be met with impatience and even distrust: “you don’t have to act like you’re dying!” or “come on, let’s speed it up”. The patient again finds herself caught between contradictory wishes: wanting clear, convincing outward signs of her illness, yet praying desperately that the disease will not get worse.

Family members and friends of the person with ICI have their own conflicting wishes and needs. They want their spouse, daughter, friend to be able to work or play but they also need to be confident that she is taking care of herself. If they see her dancing, for example, they can be caught between feelings of joy, concern, or even irritation. Liam described his feelings regarding his wife, who has MS:
“I really don’t want to nag her. She hates it and I hate it. But let me give you an example of how hard it is to refrain from nagging. I came home from work one day and she was coming into the house from the backyard. She was so happy to tell me that she had spent the day planting a lot of the seeds for the garden. I couldn’t believe it. I wanted to yell at her that she was crazy to do so much work and in the hot sun. I knew she’d be sick and tired the next day when we were supposed to go out to dinner. I held back from yelling because she looked so happy. But she knew I was tense.”
Just as mutual needs met create a solid base of satisfaction between two people, needs not met on both sides tear away at the fabric of a relationship. Many patients doubt themselves and their disease. At times they do ignore signals from their bodies, push themselves, and test their endurance. “Maybe if I just forget about it and walk normally”. At other times, they feel that they will go mad attending to another symptom. Their own self-doubt and confusion are reinforced by those around them. There is always a sense of being distrusted: “Maybe if you tried harder”. “Maybe if you rested more”. “What if you see a psychologist—or a different one?” “Well, what did the doctor say exactly?” In self-doubt and confusion, the patient is terribly vulnerable to the suspicions and misperceptions of those who should know her best.

The self-doubt and subsequent constant self-questioning are the heart of the patient’s torment. Such as a patient who suffers from chronic fatigue questions herself: “Should I give up my job and find a more sedentary one?” “Did I bring this state on by not stopping chores and errands soon enough?” “Am I like this because I ate too many foods with sugar or because I stayed up too late?”

In this vulnerable state the patient becomes overly sensitive. A friend’s simple question, “How are you?” is not simple for the sufferer of invisible chronic illness, who may be preoccupied with her body and with pain. To response “fine: sets off feelings of resentment and loneliness; yet to talk again of pain or fatigue triggers fear of the other’s impatience or rejection. A casual remark by a spouse that the kitchen cabinets are dirty or that there are spots on the rug can unleash a torrent of self-defense that is full of blame and self-pity. It is not easy to have ICI and it is not easy to relate intimately with the one who does.