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The psychological and emotional implications of living with a rare disease
Living with a rare disease is a reality that goes beyond the physical symptoms . goes beyond the physical symptoms. These conditions , which affect a small percentage of the population , can have a profound impact on the psychological and emotional state of the profound impact on the psychological and emotional state of the individuals and their loved ones. From the time of diagnosis to the implications for the family unit and future planning , we explore some of the main implications of living with a rare disease, we explore some of the major implications of living with a rare disease, perfectly compatible with a full life.
1. Feeling of social and emotional isolation
One of the first psychological effects that may be experienced is isolation. Due to the low prevalence of these conditions, many people with rare diseases feel that no one around them around them really understands what they are going through. This lack of understanding combined with the difficulty of finding others who share their experience can lead to a deep sense of loneliness. share their experience can lead to a profound sense of loneliness.
Social misunderstanding may extend to aspects of work, education or family. Many people with rare diseases face discrimination or lack of support in their environment, which intensifies their isolation.
This is something that happens to everyone, We should always try to develop empathy for everyone, especially for those around us. Only in this way, by giving yourself to others, can you prevent this effect.
2. Late diagnosis and uncertainty
A common feature of rare diseases is the time to diagnosis, a process that can take several years. This prolonged process of uncertainty can have a great emotional impact. Continuous visits to different specialists, inconclusive tests and not knowing what is really going on in your body can lead to anxiety, frustration and hopelessness.
Living without a clear diagnosis also makes it difficult to plan appropriate treatment and make decisions about the treatment and making decisions about the future, which can increase stress for patients and their families. Uncertainty about the course of the disease and its prognosis also adds a layer of distress that can affect long-term mental health. a layer of distress that can affect long-term mental health.
In view of this, It is good to know that research is being done to shorten diagnostic diagnostic times are shortened, and to know that it is best to find the disease in question. Therefore, it is essential for this process to be carried out in a timely manner, is essential for this process to be carried out in a timely manner. Do not be discouraged, you are heading in the right direction.
Impact on personal identity
For many people, being diagnosed with a rare disease changes their perception of themselves. However, you are still the same person. Trying to live the unity of life, even in difficult times for our health, is what really makes us people….. The diagnosis, whatever the disease, like other social problems, can lead to emotional crises, can generate emotional crises as the patient must reconcile his or her new circumstances with him or herself…
4. Family life
Rare diseases do not only affect the patient, but also have a strong impact on their family environment. Family members often take on the role of caregivers, They have to prepare themselves emotionally and physically. The work of a caregiver is vocational, and there is nothing better than being called to care for your loved ones. It is a great good fortune to be able to be with family in difficult times.
5. Anxiety, depression and emotional fatigue
Anxiety and depression are common in people living with rare diseases. Uncertainty about the future, fear of unpredictable symptoms and lack of effective treatments or cures can lead to high levels of distress. effective treatments or cures can lead to high levels of distress. The sense of loss of control over one’s life combined with chronic pain or debilitating symptoms can trigger profound emotional fatigue. or debilitating symptoms can trigger profound emotional fatigue.
In the face of this, you have to know that it is possible, that there is hope, and that your main mission now is the treatment of the disease combined with a dedicated, grateful, happy life, grateful, happy life.
6. Resilience and Positive Coping
Despite the many emotional and psychological challenges, many people living with rare diseases develop high levels of resilience. Over time they learn to adapt to their new realities by building coping mechanisms that allow them to find ways to live with quality of life. coping mechanisms that allow them to find ways to live with quality of life.
Professional psychological support and family life can be very important resources in this process . can be very important resources in this process, helping patients to cope with the new circumstances. In addition, online patient communities and support groups can help patients cope with new circumstances, online patient communities and support groups can provide a space to share experiences and find understanding. provide a space to share experiences and find understanding.
The key is to recognise the importance of mental health and seek support, whether through family, friends, patient groups or health professionals.
Aware of these needs, the Sant Joan de DéuFoundation and the Spanish Federation for Rare Dise ases (FEDER) have launched a study to assess access to psychological care in Spain. Through a onlinequestionnaire The aim of the online questionnaire is to identify barriers and gaps in access to this type of support in order to improve care policies and ensure adequate psychological care for paediatric and adult patients. and ensure adequate psychological care for paediatric and adult patients.
At OLIGOFASTX we know how important it is to make rare diseases visible, promote research and strengthen support systems in order to improve the quality of life of those quality of life for those living with these unique conditions.
Let’s keep working to facilitate access to a better quality of life for all patients living with a rare disease! for all patients living with a rare disease!
Sources:
Importance of Psychology in the approach to Rare Diseases
The psychological impact of a rare disease diagnosis – Infocop
Ethics and family resilience for integrated care in the field of rare diseases – Dialnet
The importance of assessing psychological care for people with rare diseases | SOM Mental Health 360