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What is it like to live with an Invisible Illness?
Although it does depend a lot on which illness you have, the effects of the illness on the way others percieve you and on your life is more easily described.
The main problem that those with invisible illnesses suffer from is that people tend not to believe that they are actually ill. Because there are no obvious signs of illness, and because the illness is usually long term, and requiring the sufferer to keep going with as much of their life as possible, the casual onlooker may feel that they are actually quite healthy and either have hypochondria, or were faking it on purpose for sympathy, attention or benefit payments.
It is better for those without invisible illnesses to think about it this way. Imagine for a minute that you have the flu. Then imagine that you have been having the symptoms for several months, and will continue to for much longer. This means that you have no choice but to do as much as you can and make the most of any energy that you have and any 'good days' you experience. This doesn't mean you actually feel well when you have to go and do your weekly shop, but it means that you are going to have to do it anyway - even with your symptoms. So you are struggling along with your trolley, feeling nasty as usual... possibly very scared because you are out while not feeling very well... then suddenly you bump into someone you know - possibly someone from work, or a friend who hasn't seen you for a few weeks. They say 'Hi, How are you' and you then have the choice. Do you say 'I'm fine' out of habit and leave it at that so that you can get on quicker with your shopping, or do you say 'actually i'm not feeling very well at all'. Unfortunately - it seems that whichever you do is the wrong one. This is because if you say 'I'm fine' then they assume that you are fine, and that you are either all better from your illness or never had one in the first place... And if you say 'Actually, I'm not very well' Then they will think that you are laying it on thick and pretending to be worse than you are - because you can't be ill to any degree where it will bother you and still have to be out doing things.
So the next time you ask someone 'how they are' be aware that they may not actually be saying what they feel, and that whatever they say could leave you with the wrong impression.
Being ill with an invisible illness is very isolating, as there are always those who will believe that you are making it up, or that you are not as ill as you say you are. As a consequence, those with IIs often feel that they need to hide their illness even more, and push on for the benefit of friends and family members who may find it diffult to understand what is happening. If you know someone who is saying that they are ill, but they are trying to keep going, my suggestion would be to talk to them about it, and to do some research on your own about the nature of the illness and how it is affecting them. This means that you will be better informed and also more understanding of their situation.
So as you can see - life with an invisible illness is not much fun. As well as the symptoms of the illness itself, you have to contend with continuing your life as much as you need to, having people not believe that you are ill, or as ill as you say you are, and becomming very lonely and isolated as a result. This is why I have developed this site - to give those with IIs the opportunity to talk about what is happening to them with those who understand; and for the friends, family members and carers who may not understand the nature of the illness or how to deal with it to get some help and support as well.