Crip-Crusoes

Most of us have sat at home watching some kind of reality show or documentary and assessed whether we could meet the challenges they involved. Surely it's part of the human condition to wonder "could I survive in that habitat?" "Could I eat that food - or manage on no food at all?" "Would I cope emotionally?"

Maybe you've wondered how you would have reacted in a war situation or simply could you get through to the last round of Masterchef without collapsing with exhaustion.

I often sit at home and marvel over the terrible and frustrating reality that someone like me would never get a chance to find out but is surely better equipped than most?

I mean can you imagine me applying to go on The Island with Bear Grylls? I already flirt with malnutrition on a daily basis and that's with the might of Mr Tesco at my disposal. They'd laugh me out of the room.

Ditto The Apprentice. How could someone with no "acceptable" work experience prove that they are capable of being Alan Sugar's next apprentice? I imagine that not being able to guarantee you could get out of bed long enough to complete the first day pretty much counts you out. If however you've learnt to plot whole strategies from a bed on a fairly regular basis, you might just surprise him by doubling your money without ever leaving the room.

I suppose I might get luckier on X-Factor as my "make-the-audience-cry-back-story" is pretty strong.

But I'm convinced there's a deeper point here no-on really appreciates. To survive a long term serious illness, you need to compensate. First and most importantly, you must train your brain to overcome the limitations of your body. We all do it to a degree. You have to think strategically all of the time, minimising every last drop of energy needed to complete a task successfully.

You often find yourself fighting life or death decisions with medics or other support workers - will you get the surgery/treatment/drug you so desperately need? You have to, failure just isn't an option. You learn that you pretty much always "can", that there really is no such word as can't when your quality of life depends upon it. And so you learn just how far human beings can be pushed without breaking.

With Crohn's disease like mine, and lots of other conditions, you probably do know what it is to really be hungry. Really hungry, not just 8-hours-since-my-last-square-meal hungry. You may have gone days or even weeks with no solid food at all. Sometimes months unable tot keep even the smallest brigade of calories on the job before they are drowned in a toilet bowl, one way or another. You get used to functioning on empty. Adrenaline often replaces what other people get from food, fueling us in different ways to others. Again, our bodies learn to compensate.

And you will probably have learnt very definitively whether you would be good under torture or not. Every long term illness will have required the patient to undergo a series of tests and procedures that are always "for your own good" but often incredibly difficult to go through. Most patients just go through these things once on their way to a cure. Manning up for a lifetime is quite a different thing. You know from bitter experience that yes, the tube does hurt, no, this won't cure you and no, it won't just be a little bit of blood. Yes the needles do sting, yes, I'm afraid the 2 litres of drink ARE very unpleasant and no, you won't feel fine afterwards.

With a medical drift towards giving general anesthetics for fewer and fewer procedures, you will almost certainly be expected to tolerate the almost-intolerable on your way to treatment. You will probably know how it feels to allow another human being to put a plastic tube through your nose. Or you will have had some kind of implant fitted under your skin whilst awake. You will know how it feels for someone to dig around unsuccessfully to find veins or arteries that just don't want to play, while you sweat and clench your teeth and look away.

As for isolation or separation from society - most of these shows involve removing the participants from their homes and loved ones - most people with serious long term illnesses will have learnt more about these things than others will ever have to learn in a lifetime. Initially you are defined by your "difference" - "she's disabled" or "she's always ill." Then, with that difference in mind you have to let people down all the time because you're too sick to be the friend they need. Or you spend months shut away in a hospital far from friends and family on a fairly regular basis.

You learn the length of time like a martial arts champion. The only way to truly know how long a day is is to sit still through one, in the same place all day, unable to read or follow a TV programme, with no visitors and only the tea trolley to mark the day into sections.

If anyone asks me what Crohn's has taught me the most, I always say patience. I'm impatient by nature and it took so many years for me to learn that I can't make everything happen when I want it to. You can't rush nature, there just isn't a way. You simply have to submit to her. Add on hours waiting for late appointments, many more waiting for desperately needed pain relief, two month waits for tests you need yesterday. 6 month waits to see the only consultant who really understands your unusual new symptom. Months or even years waiting for some government office or another to decide whether to give you any support or not. Wait, wait, wait, wait. You get VERY good at waiting.

So I'd be interested to hear from other "spoonies" about this. Is it just me, or do you all think your conditions have equipped you with coping skills that make the average reality TV star look like a cry-baby?

I think we should pitch for our own show : "A Dozen Crips-Crusoes" or "Vomit Valhalla" Maybe? There could be spin-offs - "Cancer Cove" or "Shipwrecked Shirkers" - we could compete against a few bloated city boys and see who the shirkers really are?

I'm only half joking. I think the public would be astonished to follow the lives of a dozen "ill" people for a while and I'll lay a little bet that we'd all be eating nice fresh fish, sleeping in comfy shelters and hooked up with fresh water by the end of the first day.