Lack of understanding of chronic illness: how do you deal with it?

If you are chronically ill, which means that you have been ill for longer than three months, you may be confronted with prejudices and judgments from your immediate environment and society. Especially if your illness or condition is not visible on the outside, this often leads to misunderstanding of your behavior and situation. How do you deal with that? What helps is to see why people may have certain prejudices and to talk about them openly.

Expectations of ‘healthy’ people

A chronic illness regularly leads to misunderstanding. Healthy people only know the ‘normal’, acute illness (for example flu) and behave accordingly. They know from their own experience that suddenly being ill is very annoying: you have everything planned and suddenly you feel a bad cold or flu coming on. You continue to struggle for a while, but in the end, taking rest and taking extra good care of yourself is the best solution. You are forced to cancel social appointments and report sick to work or training. In the meantime, those around you understand that you feel bad and that you need some extra care and attention, until you feel better again a week later and can get back to it. This is how it usually goes and what is expected of sick people.

Lack of understanding from the environment

The problem with a chronic illness is that it is (obviously) long-term. So after a week of understanding and compassion from those around you, after which everyone expects you to happily continue with your life, you still feel just as bad. That can provoke reactions such as ‘are you still bothered by that?’ and come across as posturing or whining. This is because ‘healthy’ people simply do not know what it is like to be chronically ill and therefore do not know how to deal with it or respond to it. This misunderstanding arises from ignorance and the comparison with my own experiences: ‘I just went back to work after a week of rest, why don’t you?’. If you realize that people generally do not mean anything bad when they judge your illness and your situation, it becomes easier to put the misunderstanding into perspective and to care less about it. People who are not chronically ill themselves simply don’t know any better. Try to see that and let go of the prejudices. You don’t need approval from others. Only you can judge.

Invisibly ill

What makes it extra difficult for people to understand and take a chronic illness into account is that many diseases are not visible. This makes it easy for people to forget that you are ill and it is difficult for them to estimate how you feel. For example, if someone has a broken leg, people understand if that person needs to sit for a while and they make room for it. If an invisible chronically ill person has to sit down for a while to recover, they are more likely to think that he or she is lazy or simply doesn’t feel like it. In general, people with long-term illnesses do everything they can to function as normally as possible and to disguise their limitations. This can make judgments extra painful. As well as well-intentioned advice, which shows that the disease is not understood. Comments like: maybe you should go to bed a little earlier? Or: maybe you should eat a little healthier, then you won’t feel sick anymore.

Create more understanding yourself

What can provide more understanding is talking about your illness and your situation and also about how certain comments from those around you come across to you. People can say hurtful things that are not intended at all, but that do have a lot of influence on you. It is good to be clear about your feelings and to indicate what you like and don’t like to hear. Suppose you haven’t been to birthday parties in a while because you felt too sick. The moment you decide to go to a party again, people quickly take that as a sign that you are better again. The result is misunderstanding if a few days later you are too ill again to fulfill certain obligations or meet expectations from those around you. ‘You were better, weren’t you?’, ‘he/she always has something to do’, ‘they go to a party, but when work has to be done he/she is suddenly too sick again’… These are just some of the statements that chronically ill people make. can hear regularly. In such cases it is good to explain what your illness entails and that a chronic illness is always present. This way you can create more understanding of your situation and behavior.

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