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Advice

It should be noted that the characteristics of these diseases, the difficulties in their evaluation and treatment as well as the lack of understanding undoubtedly determine a high level of individual and family suffering with high direct socioeconomic costs of medical service consumption. 
 
Also, various studies show that it should be taken into consideration not only these direct costs in consumption, but also the derivative costs of the functional deficits and disability, which cause the illness conditioning, loss of activities and productivity both at work and at home, and represents up to 70% of the total of socioeconomic costs. 
 
In its turn, this fact conditions a significant impact on the patient family dynamics, aggravating the distress, producing role changes and adaptation difficulties, all of which bring about significant residual losses. Though the characteristics of the patient and his/her disease are determined by the process evolution, also the family structure, its form of functioning, the produced distress level and the resulting changes could play a role in the impact causing the difficulty of adaptation, ultimately contributing to the psychosocial and physical deterioration of the patient and his/her environment.
 
In any case, one of the large causes of family crisis is the fact that some of its members suffer a chronic or incapacitating illness, which implies limitations and requires to be taken care of. The difficulties will be different depending on the person affected, his/her roles in the family, and the type of the disease.  
 
We talk constantly about the family. It is a sense of belonging that all of us have, but we will try to define succinctly the common characteristics of the family with a chronic disease, its relational and behavioral patterns, etc., so that from this definition, and therefore better comprehension of the operation of the family as system to which we belong and with which we are in constant interrelation, we can interact, modify, and change the relation so that to reach a biopsychosocial equilibrium in terms of health. 
 
Functions of the family system:
 • Economic support
 • Parenting (care, education, nutrition, games, discipline)
 • Housework  (home care, cleaning, laundry, work in the garden, maintenance of the household)
• Food (buying food, cooking, dish washing)
• Transportation (driving)
• Emotional (intimacy, trust)
• Sexual
• Spiritual
• Relations, responsibilities (extended family, friends)
• Social (friends, coworkers/partners, organizations)
• Free time (holidays)
 
Family dynamics relating to the health:
• The family is more than a group of individuals.
• The family has repetitive patterns of interactionthat regulate the behavior of family members. 
• The symptoms of the individual have a specific function inside the family. 
• The ability to adapt to a changing reality is a characteristic of the healthy family.
 • The family needs are oriented to those of the sick one, related to whom frustration and overload often grows. 
• As a response to the disease, emotional coalitions and exclusions within the family are formed and developed.
• The families adhere to these rigid patterns that are proved to be very difficult to readjust, though being very dysfunctional.
 • The style rigidity is maintained, in part, by the relative family isolation to meet the demands of the chronic disease. 
 
Family patterns of typical responses to the disease: 
·          Most families develop patterns of response to the disease in the first moments, in a sharp phase; later, they oppose to change those patterns as a change is considered to be a family threat.
·          The family is conscious of the feelings of frustration, guilt, resentment, and helplessness that the disease generates in the members, but it experiences these feelings as incompatible with the patient’s medical condition and the stability of the family. 
·        The family members do not speak among themselves about the disease, neither of the impact that the disease has on them. 
·          Most families where a member has a chronic disease have had a bad experience with a unit of the medical system. 
·          The families where a member has a chronic disease feel challenged when they are offered psychological help, because it is assumed that the help is given because they are doing something wrong.
·          Such families are not accustomed to take time to speak on the problems related to the disease, especially if their children are teenagers. 
 

Recommendations to the relatives: 
 
It is good to talk about the disease; pretending that nothing happens does not help to copy with the crisis. It is important to discuss the disease and its effects on the family and on each member particularly. 
 
It is necessary to insure that all the family members, including the smallest ones, understand well the essence of the disease. 
 
The family should provide the same opportunities for expression to all and each of its members. Maintaining the communication channel open can help avoid eventual conflicts.
 
Everyone has to accept as a valid one the manner of feeling and thinking of the other members, although it could not meet the expectations of the majority
 
The family internal functioning should be maximum flexible. It will be necessary to redistribute roles, to assume new obligations, and be creative to seek solutions in the conflict situations. It should be verified that each member of the family has a clear understanding of what the family expects of him/her.
 
The family has to avoid over-protective attitudes or make assumptions what is better for the sick one. Whenever possible, the sick should participate actively in the decision-making processes of the family. 
 
The patient has to be open to express and discuss his/her needs and limitations, without falling into the trap of a belief that avoiding exposing them thus saves his family from hardship and sufferings. The emotions and needs of all the members of the family, not only the patient, should be well understood. To be able to care for the sick member of the family, everyone has to consider personal harmony and welfare as a priority. 
 
It will be very beneficial for the patient, as well as for the family, to be able to express the feelings and emotions openly, not only through the words but also through attitudes. Do not assume that the others know how much you love them; show it to them with gestures of affection. Communicate your emotions and express hope. Let your family members know how important each one of them for you. Sharing these feelings can add new strength to follow the process of this disease. 
If your sexual life has been affected too, talk honestly with your partner about the problem, energy limitations and alternatives. Let him/her know how important for you the physical attention: touching, hugs and kisses are soothing memories for your couple. 
 
We have tried to talk a little about the family and the chronic disease, such as, for now, Fibromyalgia and Chronic Fatigue Syndrome. One finalizing comment: families are normally healthy and they use their own resources to adapt to the stress situations, such as a chronic disease of a family member, but in search of a functional adaptation in terms of healththe entire family system has to be mobilized. Only occasionally could the patient and his/her family have difficulties in finding resources to make the changes necessary in a new situation; in this case, he/she could be in need of the help of a family therapist to regain these resources and to enter again in a situation of social, psychic, and biological equilibrium. 
 
We hope these short notes will be helpful to you.
 
Emili Gómez Casanovas
Rheumatologist
Scientific  Committee of the Foundation FF
 
Related bibliography:
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9.              Roland, John S. (1994) Families, Illness and Disability. Traducción española (2000) Familias, enfermedad y discapacidad. Barcelona. Ed. Gedisa.
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