He alth is one of the most important ingredients of happiness. An incurable or severe disease, like a disability, is associated with a tragedy. We prefer not to think that it can meet us. Yet every day some people hear words from a doctor that sound like an unfair sentence. How to live with it?
Shock, horror, despair, anger, disbelief. This is generally the first reaction of a patient when he learns that he or she has been diagnosed with, for example, a malignant tumor, multiple sclerosis, or that he is infected with HIV.
Nobody is ready for a serious illness
Marta was planning a wonderful holiday abroad when she learned from a doctor that she should repeat the tests. The result was the same again: lung cancer. Her first reaction was amazement: would she get it? After all, he has not smoked for many years, he leads such a he althy lifestyle! Aerobics, swimming pool, daily gymnastics … "I was furious that nothing happened from my vacation," she recalls. - I thought it shouldn't happen to someone like me, so I repeated the tests, went to different doctors. But unfortunately the result was still the same. Sometimes it takes many weeks for the patient and his relatives to become aware of the disease and its consequences. Some of them don't get to the end.
Psychic and disease - death taboo
It's hard to talk about the disease, and in addition, the family, and sometimes doctors, feel obliged to comfort at all costs, even to conceal the truth. Leszek and his wife hid from their son that he was dying of leukemia. But it was he who said a month before his death: - I know it will be soon, I heard what the nurses say. Why were you lying? Father felt ashamed and terrified. He thought the little one could not stand the truth, so he felt helpless, lost. Besides, how was he supposed to know how to deal with his son's serious illness? - In our culture, we have already broken the taboo of birth, but the taboo of death is still in force. Recognizing its existence means a failure for many - says prof. Jacek Łuczak, chairman of the National Council for Palliative and Hospice Care. - We consider well-being, youth and successes as natural, therefore the news of a dangerous disease usually confuses our system of values and causes a shock.
The psyche and severe illness - important honesty and truth
Both the sick and their relatives need them and, according to specialists, tolerate it much better than pretending that nothing is wrong. This behavior creates additional pain and prevents you from talking frankly about what matters most. Instead of asking "Has your pain got better?", "Do you have a fever?" the sick person prefers to hear: "How are you feeling?", "Can I do something for you?", "How do you want to be treated?", "Do you want to know the phases of the disease, methods of pain relief?" Then he opens up, asks questions himself. Most patients would prefer to die at home, because in the hospital they feel anonymous, deprived of individuality and choice. - Nobody, not even the closest family and a doctor, can decide for a sick person if and when he is to learn the whole truth. Unfortunately, he often hears incomplete opinions, perfunctory answers to questions - says prof. Łuczak. - Lied to, he will not have time to say goodbye to his relatives, deal with religious and inheritance matters. Even if he has little time ahead of him, he can spend it as best as possible. Be with loved ones, feel their love, talk about things that were left unsaid, taste small pleasures. This is very important.
Unanswered questions
Doctors often hear this question, more often relatives and friends of patients. And yet there is no answer to them, because misfortune affects us for no reason and without anyone's fault. - Hundreds of times I asked myself: why me? Maria didn't understand how she could get MS. “I was thinking about a wheelchair that I'm about to land on, and I felt sick. Me, a volcano of energy! I accused incompetent doctors, poisoned food, water veins, I asked relatives about diseases in my family, the course of my mother's pregnancy …
- I couldn't understand why such diseases as leukemia affect children - recalls Leszek. “I watched my son's pain and cursed the world, God and myself for passing on weak genes to the child. I was looking for a miracle cure. Until I realized that it wouldn't do anything for him or me.
- We rarely endure adversity in a stoic manner, admits Agnieszka Wójcik, a physiotherapist from the Oncology Hospice in Warsaw. - Those who are supported in their illness by their loved ones are lucky in misfortune. Attendance and honest conversation are as important as professional care and practical help. It is also important to exchange experiences with other patients.
Anxiety and anxiety
With a severe, progressive disease, you need to be prepared for constant fluctuations in well-being and mood changes. The environment should be able to adapt to them. - A severe disease, especially with no chance of recovery, is a huge psychological burden - says BożenaWinch, a psychotherapist specializing in working with terminally ill patients and their families. - Treatment is associated not only with ailments and hospital stress, but also with unfavorable changes in appearance, loss of strength, and helplessness. Many patients have limited access to specialist facilities, many cannot afford medicines and professional care.
Suffering, fatigue, less attractiveness and limitations all raise a lot of anxiety. After the shock comes a breakdown, fear of relapse, pain, disability, losing the right to make decisions about oneself, being a burden to others. The sick are worried about the financial situation of their families or they are afraid of how they will handle themselves. Many suffer from indifference and loneliness.
Test of immunity and affection
Even for believers, the illness of a loved one is a hard test. One must show cordiality on a daily basis and, in addition to the burden of additional duties, endure the depression or aggression of a sick person who sometimes unknowingly hurts others while suffering. It's good if your loved ones understand it. - I advise the sick and their families to admit their own feelings, including negative ones, and not hesitate to seek support - says Bożena Winch. - They are often ashamed of it. I say: it's normal that you can't cope, it's normal to feel anger, despair, fear that you don't know what dying looks like.
People often do not realize how much can be done to make the patient die with dignity. The presence of a qualified nurse and giving more pills is sometimes less than talking, listening to your memories and holding your hand. - Instead of cheating together and plunging into despair, you can offer the patient a choice of how and with whom he wants to spend the time he has left - says Agnieszka Wójcik. - When someone decides to fight for their life or improve it quality, it makes sense again. For some, contacts with other sick people, with clergy, and sometimes with the past, are helpful. Some discover their creative abilities and leave behind beautiful works of art, written or recorded confessions.
Chance for a breakthrough
Such a change for the better is possible when a person accepts his illness. - It has nothing to do with resignation - believes prof. Łuczak. - Only consent to the truth allows the patient to see the positive aspects of the situation. For Marta, admitting to herself: okay, I have cancer, was a breakthrough. She immediately asked herself: can I do something about it? And it turned out that it is. She became interested in the disease, methods of treatment, she reached out to various doctors and people who had similar experiences. It was thanks to them that she believed that it was worth itfight for life, and that this fight can be won.
Maria stopped talking about suicide because she found out that in a wheelchair she was still loved by her daughters and, as before, could lead a social life. She believes that he althy people rarely enjoy the moment, every little thing, but she already knows that not a single minute should be wasted. - Life does not lose its meaning, even for terminally ill and disabled people, as long as they know how to love - says Bożena Winch. - If we are able to give and receive love, we can continue to enjoy every moment and live fully. We can still be happy.
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