Rare Diseases: Psychosocial Challenges - One Affected Person Tells Us

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Rare Diseases: Psychosocial Challenges - One Affected Person Tells Us
Rare Diseases: Psychosocial Challenges - One Affected Person Tells Us
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Psychosocial challenges - a patient tells us

Susanne M. is in her 40s, lives in Vienna and is a "rare one". But what does that actually mean? Susanne has suffered from the rare disease "systemic lupus erythematosus" for more than 20 years. Systemic lupus erythematosus is an incurable autoimmune disease with chronic inflammation of the skin, joints, nervous system and internal organs. Systemic lupus erythematosus is difficult to diagnose due to the different course forms and the extensive lack of external features and there is a lack of both medical knowledge and therapies.

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  • Deal with the disease openly
  • Which psychological and social burdens are common?
  • How can the loads be coped with?

Another characteristic of this disease: it runs in phases. Sometimes Susanne is doing well, sometimes very badly, there is no mediocrity. The constant alternation between good and bad phases hardly allows a normal life. The patient's private environment also suffers as a result. Since you don't look at the disease from the outside, Susanne is repeatedly accused of simulation and she often has to justify herself.

Deal with the disease openly

Susanne ended her professional career because it was no longer possible to work due to her health situation. For a long time she did not talk about how she was doing with the disease and believed that she was protecting herself in this way. But in the meantime Susanne has decided that it is easier to talk openly and honestly with people around her about her illness, feelings and needs right from the start. It is very important to Susanne to be treated normally and not to be pitied.

Susanne has meanwhile accepted her extraordinary situation, but too much is still in the dark and depressing. Psychotherapy is an important anchor point in her life, which takes some of the burden off her shoulders and makes her everyday life easier. Susanne feels that every little progress is strengthening and that makes it easier for her to get through the difficult phases. She advises other sufferers who find themselves in a similar situation to take advantage of psychotherapy without hesitation or prejudice.

What Susanne would like in this context: Ease of dealing with the authorities, financial support for psychotherapy, expansion of the care offer to relatives and recognition of her illness.

Which psychological and social burdens are common?

What all rare, as well as many chronic diseases, have in common is the extent of psychological stress - not only for those affected, but also for their families. The path to the correct diagnosis can be long and nerve-wracking. As a Europe-wide survey from 2017 with around 3,000 affected persons and their families shows, the mental health of this group often deteriorates over time and is less stable compared to the general population. 37 percent of the respondents said that they often or very often feel unhappy and depressed.

It becomes clear that in addition to being overwhelmed in everyday life, fear is a dominant feeling: fear of the future, fear of not being taken seriously or accepted, fear of stigmatization, fear of unclear perspectives and dependency. In addition, there are professional problems in many cases, namely when sick people or caring relatives are repeatedly absent and are therefore perceived by employers and colleagues as unreliable. The fate behind staying away is often ignored or not seen. Due to the severity of their symptoms, some people are unable to work at all or, as the disease progresses, slowly slip into disability. Often these people suffer, in addition to financial restrictionswhich result from social isolation and reduced self-worth. This is also confirmed by current survey results, according to which 52 percent of the families affected are confronted with social exclusion and family problems as a result of the illness of a family member.

How can the loads be coped with?

People with rare diseases and their relatives therefore need understanding and support in coping with these psychosocial challenges. A self-confident demeanor on the part of those affected and a sensitive approach from outsiders can facilitate togetherness.

In many cases, it is also advisable to seek psychological support in order to learn to deal with the disease in a positive way and to reduce fears. Unfortunately, for many of those affected, psychotherapy is still fraught with prejudices or the question of long-term funding arises. For this reason, there are a number of psychotherapists who work on a health insurance basis - the waiting times here are, however, sometimes long. In addition, if approved, there are small subsidies from the health insurance companies for treatment by a therapist of your choice.

Developing coping strategies is especially important for people with rare diseases, as it can be difficult to accept something that you do not fully understand and the consequences of which are unclear. Against this background, contact with other affected persons and self-help groups that already exist in Austria for some rare diseases can be helpful.

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