The Call of the Rare: how to psychologically cope with a severe diagnosis
The system of assistance to people with orphan and simply serious illnesses in Russia is one of the best in the world. But the white spots still remain. One of them is providing psychological assistance to patients and their families. Attention is being paid to this aspect, but so far, experts admit, the system has something to work on. Meanwhile, studies show that 7 out of 10 patients with orphan diseases have problems with their psychological state. For more information on how to deal with the shock of receiving information about a person's serious illness, see the Izvestia article.
How does the diagnosis affect the psyche
A study published in mid-June by EURORDIS, the largest European organization for patients with rare diseases, conducted in 45 European countries, showed that 7 out of 10 orphan patients, as well as their family members, admit to poor mental health. 44% have moderate or severe symptoms of depression. This is seven times higher than the average for the EU population. Patients report high levels of anxiety, loneliness, and suicidal thoughts. About 31% of patients have thought about suicide in the last six months.
— At the moment of diagnosis, psychological help is equally required for both the patient and family members, for whom life suddenly changes dramatically, and they are required to create favorable living conditions for the patient, — says the Chairman of the Board of the All-Russian Society of Orphan Diseases Irina Myasnikova.
Moreover, psychological help is constantly needed. With the development of neonatal screening in Russia, there will be more and more patients diagnosed at an asymptomatic stage. And at this moment, it is very difficult for the relatives to accept him.
Also, psychologists, as Irina Myasnikova clarifies, are resorted to in the patient's adolescence, when questions arise, firstly, about the acceptance of the diagnosis, and secondly, about adherence to treatment. Psychological support is also needed during the transition to adulthood of 18-19 years, when the patient is building a separate social life and must find a balance between it and the disease.
The problem concerns not only people with rare diseases. In principle, any severe diagnosis is difficult to accept, and the moment of reporting it is one of the most traumatic in a person's life, says clinical psychologist and oncopsychologist Evgenia Ananyeva. According to her, scientific evidence shows that at the moment of learning about the diagnosis, a person experiences such strong psychoemotional experiences that PTSD can form, which requires attention from mental health specialists.
—The way the diagnosis is reported determines how and with what attitude the patient will enter the long treatment process," the Izvestia interlocutor emphasizes. — The psychological shock of receiving a diagnosis directly affects adherence to medical prescriptions. A person under acute stress perceives information worse, performs assignments worse, and later seeks help.
At the same time, the family receives secondary trauma, but often remains without any support, she adds. But this is not a question of additional comfort, but part of therapy. The psychological state affects the quality of life during treatment and long-term survival when it comes to cancer, says Evgenia Ananyeva. According to modern international standards of treatment, psychoncology is considered one of the branches of clinical oncology (MASCC).
Experts of the Help for Rare support platform for people with orphan diseases note that for people who are faced with a rare disease, high—quality psychological help is primarily an opportunity to find resilience in a new reality, and such support can affect the level of subjective well-being in severe patients.
How is psychological care for patients organized?
According to a study conducted in the EU, almost three quarters of those who needed professional psychological help in the last six months did not receive it. There are such problems in Russia too.
The Help for the Rare platform reminds that in Russia, every patient, including those with rare diagnoses, has the opportunity to contact a medical and psychological office for free under an MHI policy. But in general, access to quality psychological care remains limited, and the situation varies greatly from region to region.
Nadezhda Baytsurova, a senior psychologist at the Ingosstrakh Virtual Clinic, notes that the state system is already beginning to pay more attention to this: protocols are emerging that recommend doctors to communicate the diagnosis as carefully and clearly as possible to the patient, give time for reflection, check how the person understood the information. In some medical institutions, psychologists are included in the staff or a partnership has been established with psychological support services.
"But in practice, there are still cases when a doctor focuses only on medical details, ignoring the patient's emotional state, which reduces trust and may interfere with compliance with recommendations," the Izvestia interlocutor points out.
Olga Umanova, a clinical psychologist at the Be Healthy — Nakhabino Center for Harmony and Health, calls psychological support for patients with severe and rare diseases a "blind spot" for public medicine. Leading federal centers have full-time clinical psychologists, and some regions have medical and social care offices, but all these are point—based solutions, not systematic practice.
A similar situation is observed in the oncological care system, adds Evgenia Ananyeva. Formally, the rates of a psychologist in medical institutions were returned a couple of years ago. But in reality, this is one specialist for the entire hospital, to whom patients come from many doctors.
— He almost always has no specialization in psychoanalysis, and he is certainly always overloaded. Moreover, there is no official psychoanalysis in the Russian healthcare system, there is no standard of care, and there is no mandatory protocol for patient support from the moment of diagnosis," the expert points out.
According to her, what exists in this area in the country now is based more on the enthusiasm of individual specialists and NGOs.
The Ministry of Health of the Russian Federation informed Izvestia that special medical and psychological counseling rooms have been opened in polyclinics and hospitals for patients. There are more than 1.6 thousand such offices across the country.
— Medical psychologists provide counseling, psychodiagnostics, and also refer people with signs of mental disorders to a psychotherapist, psychiatrist, or psychiatrist-narcologist. Psychological assistance can be provided in the form of planned or urgent care, the ministry noted.
On the basis of the V.P. Serbsky National Research Medical Center of Psychiatry and Narcology, advanced training cycles are conducted on an ongoing basis for doctors of all specialties, where they teach, among other things, how to work with survivors of severe stress and their families, self-regulation skills and auto-suggestion to cope with negative experiences, the Ministry of Health added.
In addition, the Russian Ministry of Health had previously sent recommendations to the regions on reporting a diagnosis if a child is suspected or found to have a disabling pathology or a risk of its development. These recommendations were developed jointly with specialists from the Academician V.I. NMC of Obstetrics, Gynecology and Perinatology. Kulakov.
How to help yourself on your own
Now the Help for the Rare platform, along with the Synchronization online lecture, has launched a free project, Finding Support, a series of video lectures and podcasts on self-help during difficult life periods. They talk about how to understand yourself and deal with complex emotions. Students are taught why people are obsessed with disturbing thoughts, how to deal with negativity constructively, how to accept difficult reality and find long-term support.
— In a variety of crises, whether it is a rare diagnosis or another difficult situation, not only external support is important, but also the ability to maintain internal stability. Our goal was to help students find their way further through sensitivity and proven knowledge," explains Olga Chuvorkina, Academic director of the Synchronization online lecture hall.
Experts of the Help for the Rare platform note that for many people with a rare diagnosis, the most difficult thing is not the disease itself, but constant worries and uncertainty.
"Initiatives aimed at improving the psychological state of such patients should work with this problem, among other things," the organization emphasizes.
Psychologists give several important recommendations to patients who are faced with a severe diagnosis. Evgenia Ananyeva, in particular, argues that in the first weeks after the diagnosis it is important not to make global decisions in a state of acute shock.
— We must understand that this is not cowardice, but physiology: the brain is not capable of making informed decisions under stress. You need to allow yourself not to understand what you are feeling, because reactions will change, and this is normal," explains the Izvestia interlocutor.
On the one hand, according to her, it is important not to isolate yourself at this moment. On the other hand, you should not tell everyone about your illness. It is better that two or three people become trusted persons. In addition, you do not need to search the Internet for survival statistics in the first weeks. This does not help, but destroys the fragile world. Olga Umanova emphasizes that instead of scrolling pages on the Internet, it is better to make a list of specific questions to the doctor and receive targeted answers.
She also lists several self-help strategies.:
— first of all, it is important to separate the zones of influence and worry only about what can be influenced: daily routine, nutrition, communication with doctors and the emotional atmosphere in the family, but not about the diagnosis, availability of drugs, etc.;
— secondly, routine can become a reliable support - habitual rituals will help to restore the feeling that life goes on.;
— thirdly, basic self-regulation techniques will help. By the way, the specialists of the Finding Support project also advise switching the brain from unpleasant thoughts to specific sensations in moments of acute anxiety by mastering grounding techniques: count in your mind from one hundred to zero in seven increments, examine objects around you or perform breathing exercises, inflating your stomach rather than your chest when inhaling.;
— Fourthly, it is recommended to keep a diary of the condition: recording thoughts, symptoms, emotions, which helps to see the dynamics, notice that there are good days, as well as track the triggers of deterioration.;
— Fifth, it is important to learn how to move in small steps: do not set yourself the task of "coping with everything at once." A day, a week, one stage of treatment is enough. Every step you take is important.
And of course, it is important to take care of the body: sleep, adequate physical activity, regular nutrition.
Who should I contact for help
At the same time, it is important not to be afraid to talk openly with the attending physician about your emotional state, Nadezhda Baitsurova emphasizes. A good specialist will tell you where to get psychological help, or he will offer to connect a psychologist.
Experts recommend contacting the medical psychology services at large clinics: N. N. Blokhin National Research Medical Center of Oncology, P. A. Herzen National Research Medical Institute, National Research Medical Center of Hematology, Federal Centers for Rare Diseases. In addition, charitable foundations (for example, the Charity Foundation "Further") can provide qualified assistance to both patients and their families: professionals with specialized experience often work there, adds Evgenia Ananyeva.
Support groups for patients and separately for relatives will be useful: this will help establish contact with those who have been through the disease, and will reduce isolation and provide real guidance.
When choosing private specialists, it is important to clarify the experience of working with chronic and severe diseases, experts warn.
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