Celia Capace - Header - name

Celia Capace - Jane's Pain

At the age of 23 I was diagnosed with Crohn's disease.  30 years later I still suffer Crohn's disease. 

Lesson one, autoimmune illnesses are chronic, which means we are never going to be totally better.  Lesson two, it's hard enough adjusting and coping with an illness without the burden of others thinking they know better and questioning the severity of our illness. “You don't look sick” is the most ignorant thing you can say to a chronically ill person.  Most people don't look ignorant and yet they exist.  

We of the chronic illness variety have good and bad days.  Even on our good days, if we push it, our bodies react negatively.  If you see us smiling or enjoying ourselves we are either pushing through the pain or we will pay for it later.  Many of the ignorant think we should wallow in misery as a permanent state of being and how dare we behave otherwise, for behaving otherwise must mean we are faking it.  Wrong!  Real illness is not always visible, if it were people would not be dying of cancer due to late diagnosis. 

An example of this ignorance is the experience of a fellow sufferer of an autoimmune illness, Jane.  Jane was fortunate to have a supportive partner and her partner had convinced her to go for a drive, as she'd literally not left the house in weeks.  Jane knew that a shower or even a change of clothing would drain her completely so decided, to appease her partner, to set off still in her pyjamas.  At first, Jane found the drive pleasant but her body soon grew weary and sore.  On the way home her partner stopped to get petrol and to pick up some supplies for home.  While Jane was waiting in the car for her partner to return her best friend approached and, in a fit of rage, tells her off because she had cancelled on a dinner invitation the night before and hadn't accepted invitations for weeks. Her best friend had been told in detail about the symptoms of Jane’s illness yet here she was screaming through the car window, not noticing Jane was in pyjamas and not giving her a chance to explain.  Jane was going through an inflammation of her condition and finding it difficult to function when she lost her best friend.  She was devastated. 

Sick people are under no obligation to prove to the healthy their condition. Unless you live it, you can not begin to comprehend.  Listen to us, believe us, be there for us if you can, but under no circumstances doubt and judge us.  That is the humane way to treat sufferers of chronic illnesses.  Most of us are struggling daily and it's a lonely, painful, never-ending existence. We have enough to deal with without a lack of empathy and insight. 

Now that I'm done with my rant, to those who have no idea what it's like to have a chronic illness, I will get off my soap-box.