I’ve had a lot of advice given to me from many different people; from friends to srangers, from all patients of chronic illnesses, and from novices to experts. Of all the advice, most was helpful and at a time when I was seeking for it by asking, but some came out of the blue and without hesitation. For the most part, its been good advice. But as in human nature, I’ve remembered the bad, stupid, ignorant “advice” more than anything else. Because it shaped me. Because you remember how to not do something more than you remember how to do something.
Here is my advice to a carer of a Crohn’s patient.
Everything takes time. I, for one, wanted to rush. Rush through the bad parts to get to the days when I wasn’t in pain or unwell or even unhappy. Sadly, its not that simple. People told me “it all be okay” or “you’ll be fine” but when all you feel is unhappy and slightly depressed, fine isn’t something that can just happen. Crohnies get angry by the smallest thing. Something unexpected and unlikely to offend, might very well do so without thinking. Not that I suggest choosing your words so careful you say nothing but explaining and being willing to understand a Crohnie, without pressuring them to talk is a good thing. An excellent thing l, even.
Patience when it comes to healing wounds, both physical and mental. Patience when it comes to acceptance too.
There will be days when being patience will be the last thing on your mind and you get to the end of your tether. You might snap and wish for your patient to just find some positivity when they are sulky and sluggish, when all you wish for them is health.
It can very challenging and demanding looking after someone with a long tern, invisiable illness because you never know when your patient will be unwell or unable to help themselves. They push through many many pain barriers and continue on because stopping is not an option. Always ask and double check. It will be worth it, for both your sakes.