Does it sometimes or often happen that you cannot take part in your own life goals or keep pace with your family, work and ordinary social life? Do you therefore feel misunderstood by those around you, discouraged and alone?

In the end, every person living with a disease has to cope with their pain personally. Yet society does not recognise all illnesses in proportion to the suffering they cause, because each group of diseases manifests itself differently on the outside.

Seriously ill people do not necessarily look ill, because a disease may not be externally visible at every stage. In sarcoidosis, a pre-acute, acute or chronic state may appear as fatigue—or may not be visible at all.

Even if you have dark circles under your eyes and chronic fatigue, and have not spent the night drinking and partying, you may appear to others as a lethargic person. The people around you may not recognise this as a symptom of a serious multisystem disease.

Even family doctors may not suspect that the condition is a dangerous immune-mediated disease.

A worsening of the disease may lead to psychological imbalance because the person does not understand what is happening and is judged coldly by those around them. The additional stress this creates may contribute to an acute state—in other words, a worsening of the clinical picture.

As you can see, I am talking about the failure of early diagnosis.

In another situation, if you are unquestionably a patient with a confirmed diagnosis and are receiving intensive treatment, nothing necessarily changes. You still have a disease that varies according to the state of your immune system.

In sarcoidosis, the immune system is like a crazed needle on a car speedometer: one moment it jumps, the next it falls, depending on the environment—the amount of allergens, viruses and bacteria in the air; sensitivity to temperature changes, stress and physical exertion; sensitivity to sleep and food; and thousands of other factors.

Seen in this way, sarcoidosis is more a disease of a “sensitive mimosa” than a “snowflake.”

In the end, you are left alone because there is no system dedicated to raising awareness of the full impact of this disease.

When you learn that you have sarcoidosis, you may find out more about it through forums and websites than in a healthcare institution.

How can we expect society to be socially sensitive when the healthcare system itself does not provide cognitive or psychological support?

Ignorance brings fear, stress, the denial of rights and discrimination.

For example, if you dislocate your ankle, the healthcare system will provide diagnosis and treatment, followed by rehabilitation such as physical therapy and guidance on how to live with a certain degree of impairment. In more serious cases, you may receive financial support, orthopaedic aids, additional spa rehabilitation, a disability pension assessment and a disabled-parking permit through the relevant social-care, pension and healthcare institutions.

In sarcoidosis, there is no equivalent rehabilitation in the form of a conversation with the patient about the extent and likely course of the disease—and what about rights? This is precisely because sarcoidosis has not broken our bones, even though some treatments can also weaken them.

The problem of late diagnosis

1. The disease smoulders and damages the body until it becomes chronic or results in death (5%).

2. The person living with the disease receives no support from doctors, society or family. They feel unwell and incapable despite their motivation, and become the subject of criticism and indifference.

There are therefore three fundamental problems behind discrimination against people living with sarcoidosis:

1. The failure of effective early diagnosis;

2. The lack of psychosocial support and social sensitivity after a diagnosis has been confirmed;

3. The lack of equal treatment in healthcare and social rights compared with people who have other diseases.

Until sarcoidosis is viewed by hospital specialists, primary-care doctors and pension-assessment social workers as a multisystem disease, patients will continue to face legal discrimination.

Sarcoidosis is therefore not adequately addressed through health prevention and early diagnosis, nor through legal, social and psychosocial support—even when the diagnosis is firmly established.

The problem of disability assessment

The difficulty is that sarcoidosis is a multisystem disease that never attacks only one organ. Its full impact is hard to assess because doctors often focus on treating the most acute organ rather than on fatigue, skin and leg pain, shortness of breath and the other limitations experienced by the patient.

For example, when sarcoidosis mainly affects the lungs, documentation may focus on the lungs and on measuring capacity. A reduction in lung capacity to 95% would certainly not be considered sufficient for disability support.

At the same time, severe pain in the legs may be overlooked. The same can happen with severe fatigue, weakness and exhaustion.

Is disability not already present when a person can no longer function normally in everyday life?

Why do weakness, fatigue, exhaustion, impaired mobility, breathlessness and lack of strength during exertion not have a proper place in disability assessment?

They are often left out because sarcoidosis is not classified specifically within the neurological, cardiac, dermatological, rheumatological, nephrological or haematological groups of disease.

It is most often placed under pulmonary disease. In that context, the pulmonary symptoms of sarcoidosis may appear clinically less severe than tuberculosis or cancer of the lungs or lymphatic system.

Because of these realities, people living with sarcoidosis are often like people on a deserted island whom society does not take seriously.

One morning, after a long time, I came to work without walking sticks. My legs hurt less. Four hours later I collapsed. My colleagues were surprised and asked how I could be worse when I had seemed well in the morning. Some people do not see me often, so they notice that I look worse and more exhausted. Others think I am improving because I try to integrate myself into life as much as possible and keep up with their idea of normality.

To some people we may seem like imagining hypochondriacs or actors; to the majority, we are simply a great unknown.

Because of this psychosocial “fog,” people living with sarcoidosis and other rare diseases need an association that raises social awareness through education, psychosocial support, promotion of rights and the fight against discrimination.

Dino-Josip Ključarić, Master of Theology