Never ill meets chronically ill

How I became aware of the invisible



How often do you judge other people’s behaviour? I do it a lot (most people do, I guess). Interpreting the way someone acts is important for every situation and relationship so of course we always try our best to read people. But how often do we misread? My boyfriend's chronic illness showed me how much inner issues influence someone’s body, mind and therefore their whole behaviour. Let’s face it, there’s so much we don’t see when looking at someone. But we can improve that by being educated about the invisible and by learning to imagine causes beyond the obvious.

My boyfriend suffers from Cystic Fibrosis (in German it’s also called “Mukoviszidose“), an invisible illness that mainly effects the lungs and stomach but has many knock on effects as well. It can cause diabetes in adults and the digestive system doesn’t work like it does for a healthy person. He needs to take capsules for every meal to be able to digest the food. He needs to take the right amount of insulin afterwards and extra vitamins to help his almost not existing immune system to fight off bacteria and viruses that are all around him wherever he is. As his body can’t fight off germs on its own he needs different antibiotics and steroids which have some pretty nasty side effects one of which is feeling nauseated most of the time. So struggling to eat while needing to put on weight (while tending to loose weight quickly!) isn’t the only predicament. He also needs to do home treatments with chest physio, stretching, inhalers/nebulisers and regular exercise all while feeling exhausted most of the time. This not being enough the illness causes headaches and different back and joint pains which makes necessary stretching and movements very hard on many days. Now this is –not even having mentioned details about it all– an unbelievably long list of difficult circumstances. But what do people see when they look at him? Well, as long as he’s not “ill”-ill (meaning ill on top of his chronic illness) they see, as did I at the beginning, a seemingly healthy and trained guy, in good shape who seems to be so capable in life (especially as he owns his own business back in England) and so naturally talented when playing instruments. But no one except for his family, me and a few closest friends got to see how hard he’s working on just being alive and seeming normal. There’s so much going on in his body which isn’t visible from the outside. But it’s those inner actions that can make him tired, irritated, withdrawn or even selfish at times because they make his body a mad place to be.

For me it was a completely new experience to be with someone who has issues like that. I can probably count on my two hands how often I have been ill in my whole life. For me, being healthy is normal and I took it for granted until I met him. But the point I want to make here is not that I appreciate my health more and I don’t want to raise a warning finger that you should do the same (while it is recommendable in case you are healthy ;-)). The point I want to make is that we can "see" the invisible if we learn to be aware of it. Of course we can’t learn about every illness nor can we be taught about every possible fate someone can bear. But I learned about this one and it already made me aware of the invisible in general which is something that gives me the ability to imagine what might be beyond the obvious. I’m attentive when observing things and people and I always wanted to use that skill to see what’s behind… well, anything. Especially when designing for people with special needs in special situations you simply need to be sensitive for hidden stories. Think about other people's perspectives: Is there a smell you might not notice that does have an impact for someone else? Does material feel different to someone else than to you? Is there a noise that irritates someone else even though you don’t care or maybe can’t even hear it? Is there pain or discomfort you don’t experience but someone else might? What needs might people have that you don't?

What it comes down to is: You don’t only need to be creative in finding answers, you first have to be creative in asking questions. That can be the key.