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Invisible chronic disease - "You don't look sick!"

August 29, 2019

They are rarely meant to hurt, but comments like "you don't look sick at all" can sometimes be tiresome. It’s tiresome, because for many, these comments can put one’s illness into doubt with just one sentence.
Especially people with "invisible" chronic illnesses often have to struggle with this topic. Some even describe it as a "parallel universe". Nothing is visible on the outside, but inside one may feel miserable, and millions of people are in a similar situation. Behind it is often biased (and of course wrong) assumption: one can’t be ill if they look “healthy”, and if one is ill it must be visible.

Since the condition is invisible, many fear to be labeled by friends, family, employers, doctors, and the general public as lazy or malingering. There may be misunderstandings and sometimes thoughts like these can arise:

  • They do not not believe that I am ill,
  • They probably think I'm just lazy, because I can't work anymore, and now I'm walking around,
  • If I do something with friends, they will think I’m only malingering.

These thoughts can lead to further behavior that can have a negative effect on coping with illness, and maintaining mental health, as well as general well-being.

Some develop (irrational) feelings of guilt. Because they may often hear that they look healthy, they feel guilty of being sick, and unable to "defeat" the disease. Sometimes this can lead affected people to withdraw, and avoid involve their environment with their plans, fearing that their “healthy” behaviour could give the wrong impression of feeling better. Behind this is the "fear" of being misunderstood, and the future explanation and justification in case one cannot do exactly the same activity the next time. Hiding one's activities doesn't feel good, of course, and this can reinforce a feeling of isolation from others.
To avoid all these situations, many react with social withdrawal from friends, family, and the general environment. This results in a vicious circle which can have a further negative impact on one’s own well-being and mental health.

What can be done about it?

A good first step to deal with these thoughts is giving the benefit of the doubt: one should always remember that our perception of others can be wrong. Often there’s no reason to assume that people stating one doesn’t look ill, do so with any ulterior motives or guesses. Maybe it is just a compliment. You want the benefit of the doubt, and should also grant it to others.

However, one should learn how to deal with one's own reactions and the feelings that often accompany them, such as shame, guilt, or the impulse to justify oneself, professionally. The reasons often reach deeper, and own needs must be known, and mechanisms well understood, to find a good way of coping.
This is enormously important for one's own well-being and mental health, since feelings of shame and guilt, and defensive attitude towards one's surroundings, make it difficult to embrace the good and positive aspects of life. This is critical, especially in everyday life with illness.

Vila has developed a digital companion

Vila Health has developed a smart, digital companion that supports people with chronic illnesses in a holistic and sympathetic way on their journey. They are guided step by step through a psychological program, and receive valuable methods and tools for dealing with the specific challenges of everyday life with illness. Among many other topics, users of Vila tackle:

  • Communication with others about my disease: With whom do I share what with? And above all: How?
  • Causes and strategies of dealing with feelings such as shame, guilt, or the impulse to to justify oneself,
  • Reacting to unwanted, insensitive, and hurtful comments from others,
  • Sourcing positives and strength from the environment, and everyday life.

The goal of Vila is to improve one’s quality of life, despite and with illness.

Register now for free and get started! For more information and registration: LINK

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