Chapter: Patients and relatives
Article: 3 of 7
Update: Mar 11, 2021
Relatives, parents, siblings, family, partners and friends are emotionally connected and feel a sense of responsibility. They are challenged because the disease affects many common areas of life. Parents or partners are directly involved in decision-making and care. This requires a great deal of commitment, stamina and putting one’s own needs aside, and not infrequently leads to physical and psychological exhaustion.
Relatives lack the necessary time and energy for their working lives, they put their own careers on hold, and absenteeism due to appointments occurs. For siblings, partnership and their own good health are needed to find a common solution when dealing with time, attention and energy.
The disease is present and a lifelong issue. For this very reason, zest for life and light-heartedness should still have their place. Relatives must realize that the disease is only “one part” of their child, sibling or partner.
In most cases, the symptoms of the disease are already visible to everyone at birth. Especially during the first encounter, sensitive and positive wording from doctors is helpful for relatives, e.g., “You can’t mistake your child”. Succinct statements, on the other hand, such as “he/she will grow out of it”, are factually incorrect and shallow. Detailed and shocking statements by the doctor at the very first interview will be very disconcerting and overburden parents. In contrast, medical perspectives and trust in the development are helpful support that many patients are looking for and that strengthen them for the future course of the disease.
“When I first saw my little S. with her bruise on her face and then learned about the venous malformation, it was hard for me and my husband to accept that the disease would not go away. I cried a lot, feeling guilty. Every night I sit by her bedside and watch her full of worry and anxiety. Sometimes tears would roll down my cheeks. But when I think about how cheerful, happy and sweet she is, how many friends she has and how quickly she connects with people, I feel better again. She is handling her illness so well.” (Mother of S.)
Predominantly mothers report their feelings of guilt about their child’s illness. They also usually suffer more from professional and financial restrictions because of their child’s care.
“It took about a year to receive an adequate diagnosis. We saw 13 different doctors. It took a lot of time and energy. We had been given different, opposing suggestions and had to decide as laypeople about an issue we had no idea about, but which would affect our daughter’s life.” (M.d.S.)
“As parents, it is a feeling of helplessness and uncertainty because no one can really say what the future course will be. .... You have to rely on your gut feeling, which is a big responsibility. One is often uncertain.” (V.G.)
The parents have to agree to a therapy that will have an impact on their child’s life. They try to make sure that the treatment is carefully implemented and that their child is doing well. Sometimes, given these responsibilities in the early years, an ease in the couple’s relationship is lost and the relationship becomes severely strained.
Not only parents, but also partners report worries, feelings of guilt, being overwhelmed by the situation or living everyday life with it, constant stress, depression, fear, insecurity in dealing with the disease, helplessness and the feeling of powerlessness, not being able to help or not being able to help enough. In addition, there is the fear that one’s own strength is not enough to get through it, as well as concerns about the future.
There are partners who easily bear the disease. And there are partners who report that they doubt whether they can stand being involved with the disease and dealing with it and the limitations; whether they can live with the potentially severe pain or their partners’ sadness that sometimes occurs.
The disease can cause other family members, usually the siblings, to feel neglected and increase tensions between family members. Siblings in particular often have to take a back seat, sometimes they carry worries with them and develop feelings of responsibility for the affected sister or brother. They should be especially involved, they also need the support of parents and need their own space.
Family, partners and friends are called upon to remain “flexible” in everyday life and in planning. For example, in the event of an acute worsening of the illness, vacations may not be taken or vacation days may be used for medical care.
Relatives also find doctor visits challenging: finding a doctor requires time, patience, energy, repeated trust-building, repeatedly explaining the illness to other doctors, arguments. Doctor-patient discussions do not always take place on an equal footing, sometimes proceed problematically and with little time for follow-up and later questions. Reports and findings are not issued or forwarded.
Other families and couples experience exactly the challenges outlined above as a strengthening of their bonds. With courage, an open approach to the disease and support, they develop their own positive way of dealing with the situation − a life with a different plan.
In interaction with other patients, e.g., in patient support groups, people can pass on their own experiences and life plans as well as helpful tips, which strengthen skills, illustrate life prospects and simplify everyday life.