Trapped in one’s own body

What do you do if your body isn’t functioning the way you want it to? There is no two- week return policy. We can’t ask for a refund or an exchange like we can with a pair of shoes that doesn’t fit properly. Desiring a self that is not incurably sick is huge. Someone who is overweight and wants a bikini body can exercise and change their diet, but people with incurable diseases like cystic fibrosis (CF) can only relieve their symptoms. Sometimes it can make them really angry and frustrated, as the “Letter to my chronically ill body” shows. Our author, who has CF, wrote this letter to herself and sent it to us. It gives us a brief but intimate insight into her multitude of feelings. It doesn’t have a happy ending, but at least there is an attempt at a conciliation.

You fight pollen instead of steeling yourself against your real enemies: viruses and bacteria. Are you stupid? Your intestines can’t digest fat, your pancreas is on strike and doesn’t produce insulin - in a nutshell: you can’t even get your basic bodily functions right. You don’t deliver even though I am forced to live with you in a performance oriented society. Your behaviour gets me into trouble more often than I’d like. If you were my employee, you would not get a bonus. For your poor performance, I would cut your pay or even better, fire you on the spot. But I can’t. I am cursed to be on your team forever.

Why am I distancing myself from you like this? Maybe because I don’t have any conscious influence over you and I am at your mercy. Sure, I can give you silent commands like ‘Go up the stairs’ or teach you to ride a bike, but only for as long as you allow it and permit me to do it. Before, you used to go along with almost everything. Not only was I able to keep up with healthy people, but sometimes I was even better than them. That made me very proud and I thought I had you and your shortcomings well in hand. Yeah, you used to complain a bit and feel weak for a little while, but mostly you were on board, and you bent to my will. Now – and when I am being honest, it’s been a couple of years now – you are walking all over me. I can’t rely on you anymore. You are collapsing under the weight of this disability and you aren’t running on all your cylinders any more. I am used to a different level of performance, but I am guessing you are doing your best.

In a way, I am grateful to you for that and want to be forgiving with you. You look delicate and fragile, but actually you’re a pretty tough cookie. Even though there is a lot about you that doesn’t work right, you’re keeping me alive. Since we were born, you have beaten the odds several times. Although you have had to handle countless powerful drugs for four decades, you still get me through my daily routine with a child, work and home. The drugs have given you a black eye or two, but the side-effects have never laid you out completely. Surgery every year for several years – not everybody could handle that the way you have. For this, I should acknowledge your effort and thank you for your service, your perseverance, your flexibility and your fighting spirit. Somehow, I am proud of you even when I’d rather not have to talk to you about this subject at all. Anyway: Truce? Truce! At least for today.

Your XXX

Note: The statements made in the report are the individual view of the person reporting. They do not necessarily reflect the PARI view or the general state of science.