Stress und seltene Krankheiten: Wege zur Entlastung

Why stress is so common in rare diseases

Stress is a natural part of life. In healthy phases, it helps us overcome challenges.
But in people with rare diseases, stress often turns into a persistent, disease-causing burden.
The reasons for this are diverse and often interact. Here are the most important causes:

Uncertainty and long diagnostic processes

Many sufferers search for years for a diagnosis .
During this time, they undergo countless doctor visits, tests, and misdiagnoses.
Every assessment raises hopes – which are often dashed.
This state of constant uncertainty is one of the most powerful stressors of all.
It creates feelings of powerlessness (“Why doesn’t anyone figure out what’s wrong with me?”) and the feeling of not being taken seriously.

Complex bureaucracy

While the Swiss healthcare system offers a wide range of services, reimbursement and disability insurance applications are particularly complex, especially for rare diseases .
Those affected spend hours on forms, medical reports, appeal procedures, and discussions with health insurance companies.
They often feel like “supplicants” and find the process humiliating.
This constant bureaucratic stress saps energy that could otherwise be used for relaxation or socializing.

Deadline and therapy pressure

Many rare diseases require regular checkups and treatments .
Some sufferers spend several days a month in hospitals or with specialists.
Work, family, and leisure time must take precedence over medical appointments.
Added to this is the internal pressure: “If I don’t attend every treatment, my condition will worsen.”
Thus, the appointment calendar becomes a constant source of stress.

Stress from the social environment

Even well-intentioned comments like “You just have to think positively” can be stressful.
When friends or family members don’t understand why those affected can’t accomplish certain things,
additional pressure builds. For many, the feeling of constantly having to justify themselves is a trigger for stress and withdrawal.

Own demands and feelings of guilt

Many patients have high expectations of themselves:
They want to work, be there for their family, manage their household, and at the same time have their illness “under control.”
If this ideal isn’t met, feelings of guilt arise – a perfect breeding ground for long-term stress.
This internal pressure often leads to a spiral of overwhelm, exhaustion, and self-reproach.

How stress affects the body and mind

Stress isn’t just a feeling—it’s a physiological reaction .
The body releases stress hormones like adrenaline and cortisol, which are helpful in the short term.
However, when stress becomes chronic, it causes illness.
The consequences can be particularly serious in rare diseases:

Psychological consequences

Chronic stress increases the risk of depression, anxiety disorders, and sleep problems .
Many affected individuals report inner restlessness, irritability, and difficulty concentrating.
The feeling of being “constantly on edge” often leads to social withdrawal and isolation—
which in turn increases stress.

Physical consequences

Chronic stress impairs the immune system, increases susceptibility to infections, and impairs wound healing.
People with rare diseases often report that their symptoms are particularly severe during periods of stress.
Pain is also perceived more intensely because the nervous system is constantly on alert.

Impact on disease management

Stress can directly impact the course of a rare disease.
It reduces the ability to absorb medical information, impairs treatment adherence
, and increases the likelihood of patients avoiding important medical appointments.
This creates a dangerous cycle: More stress leads to poorer care—which in turn creates more stress.

Practical examples from everyday life

Case 1: Markus, 42, with an autoimmune disease:
He works 60% of his hours and spends several hours with doctors each week.
He also takes care of his family and fills out health insurance forms. He
has little energy left in the evenings. Only through regular rest breaks and breathing exercises has he been able to reduce his stress levels.

Case 2: Lea, 35, with a rare metabolic disorder:
She felt constantly under pressure to perform at 100% at work.
After repeated absences due to illness, she developed strong feelings of guilt.
Only counseling with a social services provider helped her adjust her working hours and workload realistically.

Case 3: The Keller family, daughter with a rare syndrome:
The parents struggle with disability benefits applications, therapies, and school.
They feel constantly stressed because they “always have to fight.”
Support from a patient organization relieved them considerably, as they no longer had to carry everything on their own.

Strategies for long-term stress management

1. Create structure

A structured weekly schedule provides security and reduces uncertainty.
Plan not only doctor’s appointments, but also deliberate relaxation time .
Some patients use apps, others use paper calendars. It’s crucial that breaks are given the same importance as appointments.

2. Delegate bureaucracy

Many feel overwhelmed by forms. Support is available in Switzerland:
social services, patient organizations like ProRaris, and counseling centers help with disability benefits applications or health insurance appeals.
Sharing this burden provides more freedom and significantly reduces stress.

3. Mindfulness and relaxation

Studies show that 10 minutes of mindfulness per day can significantly reduce stress levels.
Breathing exercises, meditation, and progressive muscle relaxation are particularly effective.
It’s important to practice these routines regularly—short and frequent rather than infrequent and prolonged.

4. Set realistic goals

Many people set excessive expectations for themselves.
Small, achievable goals are better: “I’ll work a stable 50% and have energy for my family” instead of “I want to work 100%.”
​​Such realistic goals prevent overexertion and create a sense of achievement.

5. Movement and activity

Light exercise like walking, swimming, or yoga lowers stress hormones.
It’s important to choose activities that are enjoyable—otherwise, exercise itself becomes stressful.
Doctors and therapists can recommend appropriate programs.

6. Psychotherapy

Psychotherapy is covered by basic insurance in Switzerland if prescribed by a doctor.
Discussions help identify stress patterns and develop new strategies.
Behavioral therapy approaches that provide concrete structure for daily life are particularly helpful.

FAQ: Frequently Asked Questions

Why do I find even small tasks stressful?

Because your body is already strained by illness and constant stress, small demands seem larger and more difficult to manage.

Does exercise really help against stress?

Yes – regular exercise reduces stress hormones and improves mood. Even light activity is enough.

How can I better deal with bureaucracy?

Seek support – social services, counseling centers, or patient organizations can help reduce the burden.

Can stress make my illness worse?

Yes – stress intensifies symptoms, weakens the immune system, and makes it more difficult to cope with illness. Therefore, stress management is an important part of therapy.

Does health insurance cover relaxation programs?

Basic insurance covers psychotherapy if prescribed by a doctor. Supplementary insurance sometimes covers courses such as yoga or mindfulness training.

Conclusion

Stress is not just a side effect of rare diseases, but a key exacerbator of symptoms and limitations.
Chronic stress weakens the body and psyche, prolongs diagnostic processes, and complicates disease management.
The good news: Stress can be reduced with clear strategies.
Structure, relaxation, social support, and professional guidance help reduce stress and improve quality of life.

Dr. Jens Westphal and his team provide patients with holistic support—medical, psychosocial, and organizational—
so that everyday life becomes less stressful and less demanding despite their rare illness.