This week marks ten years living with ulcerative colitis. Not an anniversary to celebrate. No. However a moment worth marking nonetheless and I’d like to bear witness to my experience. My intention is to do so as a recognition of all the other people who are living with a chronic illness or for those who might find these words when they are first diagnosed, and search (as I did at the time) for some hint that life goes on.
I haven’t learned enough in life yet, but I have learned that my burden is not the heaviest nor the only burden being carried. So many people suffer every day, and that’s the normal part of their day. Many of them are brave, they are courageous, generous, loving and all those things that people are and to me they seem to be saints because they do all of that without ever asking for pity or a special deal for their own personal situation.
I’ve never been like that. I grew up a self-centred, petulant and ego-driven individual who coasted through life enjoying good health and generally easy successes. If something didn’t go my way, I threw a tantrum. I was bad mannered and basically, if you’ll excuse the expression, a pain in the arse.
Like many people I was misdiagnosed in the early stages and also like many people, the arrival of this condition was extreme. I won’t bore you or try to shock you with the tedious and grotesque details, but if you are interested, by all means read about ulcerative colitis on Wikipedia and be warned, it isn’t pleasant and there are pictures. The first months were a traumatic roller-coaster of denial, endless specialist visits and a cocktail of anger, fatigue, loneliness and humiliation.
Anyone who has a chronic illness has probably had a similar experience in the broad sense. It is something that undermines your sense of identity, worth and optimism. I came to my knees and the landing was hard. Nothing was fair, and no amount of tantrums would change the physical facts. I kept fighting, and I kept not getting anywhere. Chronic illness does not have any obligation to get better or ease up or otherwise change itself just because your life is falling apart.
I can’t go on
For me, it got a bit worse psychologically even while my physical symptoms began to stabilise. Due to the large blood loss sustained on a daily basis, I had a lovey delicate pallor that was visually appealing. I didn’t have anything bandaged, or in a cast, or visible bruising – I looked pretty good. Inside I was in constant pain (no suggestion at that time from any specialist that I seek or simply be given some support for this, other than more drugs) and questioning if this might be a good time to make an informed decision to exist the great stage. Not only was I not confident that the daily regime of drugs would ever restore me to functional operation, but I felt that I had lost my place in the world. Who would ever want someone this broken?
I’ll go on
Thankfully, I didn’t have the energy or the requisite escape-velocity of self-loathing to finalise the exit at that time and urgent practical matters took my mind off the subject in the long, dark nights. If you’re in the first year or so of having been diagnosed with a chronic illness, please get support as soon as possible for managing your physical and emotional pain. Much as you may think it, you’re not currently in a position to make an “informed decision” about what to do with yourself. In hindsight, I can see it was my ego throwing a pretty big tantrum. A bluff I wouldn’t wish on anybody to call.
The sun rose in the east, arced through the sky and set again to the west. The tides of the moon and the wheel of the year swung around me while my bubble of self-protection and self-pity got cramped and ever lonelier. People have different experiences. I was slowly to learn that I was one of the lucky ones. For a long time I kept a list of illness I was grateful I didn’t have and it got longer as I began to listen to other people’s stories. The burdens I was unequal to carrying slowly lightened as I was able to return to work and also to listen with empathy to what others were carrying. It was still unfair, and so little in life was, that the bleakness never wavered. Days trudged by and the game became one of fighting boredom. I was still fighting, still not winning, still pushing people away as much as begging for closeness. It was a life, but it felt hollow. The fight had been to stop the illness from taking over, from changing things, from taking the freedom of choice away. Laugh if you like, it had done that from the moment it appeared, would I ever come to my senses and stop fighting something that had already won?
The trouble was, chronic illness is so easy to see as an enemy. For years I thought of it as a great coiled serpent where my bowel should be. A serpent that in some nightmares ate me whole from the feet up. My powerful enemy could bring me to my knees at any time it cared to flex and coil, raise and strike. My feeble body was a warzone of drugs, fear and fatigue.
What if it is all ok?
Thankfully there are a lot of wise and giving people in the world, some of whom planted seeds of wisdom and compassion in my stony skull. I still had some long dark nights where I wondered if all this effort was for nothing, yet at the same time I slowly began to understand the incredible power of helping other people. I began to see a third way between the fantasies of freedom and total annihilation. The endless confrontations with nightmares opened my other eyes to the shadows I held within. Most importantly, I accepted that sometimes the pain was horrible and I stopped trying to anticipate that or wish it away. I held a rock and took it one breath at a time. I checked in every few breaths, maybe changed the rock to the other hand. Breathe. Right now. This is what is happening. Time helped the reality replace the fantasy. I could live in the cracks. Maybe I could bloom where I was planted too. What if I was ok enough?
It is what it is
There’s no snake now, no enemy, no answer either. I have a thing, like you might, or someone you know does. I manage it as best I can and sometimes I can’t. Sometimes I forget I have it, other times, well, I still have that rock to hold. My road in the last ten years has been hard work, and followed a river of tears. Along the way I’ve changed and (hopefully) grown. I wish you all the best on your journey, just remember, we’re all in this together.
Of course, your mileage may vary.