In 2022, I am celebrating 50 years of a most unwelcome partnership.
It was that long ago that I was struck down by Crohn’s disease: great pain, long school absences – two whole half-terms – hospital stays, physical examinations, blood tests, x-rays, barium meals, a blood transfusion, powerful steroids and, a year later, major surgery.
Since then, I’ve been lucky, suffering few serious episodes, and have lived a relatively normal life, even with my unwelcome partner always by my side.
I suffer it for the pain it is and wish it were not with me.
In recent years, I’ve talked about it more, but on reflection find it’s best not to feed its attention. Otherwise people see and talk about it and not about and to me.
That’s the problem with disease and disability: if it’s invisible, people ignore it; if it’s visible, they focus on it.
My original intention for this post was to joke about this anniversary, before, true to character, Crohn’s again wrought its vengeance, creating disruption for me over Christmas and into the New Year. I never know how serious it is, but with clear blood tests and a doctor’s examination, it appears minor, although it drained my batteries.
This disruption often strikes when most I need fitness and energy – stress is a possible cause. It’s also the reason why, when employed, I ensured I had an exemplary attendance record: not to impress employers or colleagues, but, vitally, so I maintained a normal life. Often, when you start work, you forget you’re not feeling 100% and have a more positive day than moping about at home on a sickie. There are times when you are properly sick and really do need time off to rest and recover.
When you’re damaged – my immune and digestive systems are damaged – you often have to work differently and harder to keep up in education, employment and other areas. It’s not easy, but I see my achievements as greater than healthy people without this extra challenge.
What would I say after 50 years?
- Choose partners carefully. Look after your health because it’s bad enough life dealing you a partner like Crohn’s without acquiring a similar one through self-neglect.
- If you have a long-term condition, work hard for yourself. We may need help, but don’t rely on it when you don’t have to. If you can ever reach a stage where you can forget your condition, even occasionally, you live a fuller life.
- If you’re starting out, don’t be disheartened. I attended a lecture when I was 20 on major health problems I could likely encounter. I ignored it so I could just get on and live. Apart from missing out on camping, cycling and certain foods, my life is relatively normal and I am physically fit.
- Accompanied by my unwelcome partner, I have reached a place of contentment. How different might that be if it had not been with me? Would I be in such a good place? Do I grudgingly accept my partner?
- My batteries are now fully charged so now, a little late, I can get on with 2022 . . .