Preface: This is a personal story. I was in doubt for a long time whether or not to post it here, because I have always remained rather ‘closed’ about my diagnoses and medical issues (I have posted about it in Dutch on Spondygazet, but that was always anonymously). Maybe internalised ableism/healthism played a role. But in part also because of possible backlash from health shamers (stay away please). I post it here as part of my ‘accepting’ process.
2020 has been a difficult year for me. Yes, that seems like an easy opener. With a worldwide pandemic that has affected all 8 billion people on this planet in one way or another, it probably has been a difficult year for most. And it still is. Also for us. On top of that, in the Fall of 2019 my husband was hit by a car cycling on his way to work, followed by a long and difficult revalidation. In March 2020, our social life was starting to look somewhat ‘normal’ again, but then came Corona and it was – again – put on hold.
I will however not only remember 2020 as being the ‘year of Corona’, but also as the year in which I had surgery and my colon was removed (a colectomy). Besides being diagnosed with Ankylosing Spondylitis (a type of arthritis) 30 years ago, I was at the same time also diagnosed with Crohn’s disease (an auto-immune disease affecting the gastrointestinal tract). After 30 years of constant battle with both diseases, chronic pain, side-effects from medication, periods of no appetite, nausea and diarrhea making me go to the toilet more than 20 times a day, fistulas, my weight yoyo-ing up and down in a range of nearly 40 kilos, searching an appropriate therapy and numerous doctors visits and colonoscopies, there was no escaping it anymore. The colon had to go. Irreversably damaged and too much scar tissue and strictures.
It didn’t came out of the blue. After a colonoscopy (an internal exam of the colon/large intestine) a little over three years ago, I was already given the verdicht. Serious strictures, inflammation and risk of obstruction. ‘That will require surgery, a part of the colon will have to be removed. It doesn’t have to happen immediately, but better not to wait too long‘ the professor said. I had always – rather subconsciously – thought or hoped that I would belong to the 30% of Crohn’s patients who never need surgery. I didn’t really want to ‘hear’ this verdict and thought: ‘I will manage. I can beat this! A ‘little bit of stricture’ (my interpretation) won’t get me down‘. I’ve been bravely resisting all kinds of shit (pun) that Chrohn’s has thrown at me over the past 30 years. I can manage this too!
Fast forward to 2020. At the beginning of the year I was feeling ‘ok’ (although that’s a relative statement dealing with with two auto-immune diseases and several other diagnoses on the side). My last colonoscopy in 2019 did reveal that the condition of my colon had deteriorated further, but my appetite was reasonable and my weight was rather stable. I did feel something was quite off in my belly, and the strictures (the narrow passages in my colon) bothered me. I considered the suggestion from my doctor to try new medication that maybe could reduce the inflammation and as such try to ‘open’ the strictures somewhat.
Changing medication sounds more simple than it is. I cannot just stop taking the medication that I’ve been taking for 14 years since that keeps the Ankylosing Spondylitis (arthritis) livable. Quitting that would make the pain from the arthritis unbearable. But taking new medication on top of my current medication (an anti-TNF) would be a bit of gamble. Because a possible side effect from both medications is that they can compromise (lower) one’s immune system, exactly what I’ve already been experiencing for years. I feared that the combination of two immunosuppressant therapies would be overkill. But by Spring and gradually worsening symptoms I was ready to take the gamble.
Then came Corona and everything went mayhem. Postponed and also cancelled doctor’s appointments. With a super contagious virus and a world wide pandemic I felt it was too risky to gamble with new medication and my immune system, so after deliberation with my doctor I decided to wait. However, the inflammation got worse and worse and by the end of Summer I had lost 15 kilos. No more appetite. Nausea. No energy. Lying awake every night with horrible abdominal pain. Toilet visits up to 20 times a day because of diarrhea. I was forced to elimante certain foods from my diet like nuts, whole grains, granola, raw vegetables and mushrooms, because they simply could not pass through my colon anymore. Even with a careful diet I had some blockages that I fortunately managed to ‘unplug’ with eight bags of dulcosoft in one go. Such a blockage is very painful and scary experience, because a bowel perforation is no joke and can potentially be fatal.
So after some more examinations in the Summer I agreed to have surgery. The surgeons would remove up to two thirds of my colon through a keyhole operation. If everything went according to plan I would have to stay in hospital for three to four days. The need for a stoma bag could only be assessed during the operation, so that was wait and see.
September 2020. On the morning of my surgery I was waiting in my hospital room til they would take me to the operating theater. I was very tired because of all the restless nights, but I was also overcome by a profound sadness. It had finally come to this. I had to have surgery and a part of me will be cut away. I didn’t want this to happen, but it was inescapable now. I was in a dead end, no other options.
I put on some of my favourite music to kill time, but that downhearted me even further. It didn’t really help that I choose to listen to some songs from Steven Wilson who isn’t particularly known to make the most cheerful music 😉 Beautiful prog rock, but very melancholic (I recommend these two songs as an introduction: The Raven that Refused to Sing and Routine).
It didn’t take long before my eyes teared up. I didn’t want to budge and went on to listen to some other tunes. Come on, stay strong! But when I was brought to the operating theater I still had to fight back the tears when speaking to the anesthetist. It wasn’t that I was afraid or nervous. I was just sad. Many memories about the medical path that I had travelled had popped up in the hours leading to the operation: the numerous hospital visits and exams, how I had graduated in my early twenties (cum laude!) with a face the size of a pumpkin (moonface) due to years of taking cortison medication, how my husband kept on supporting me through all of it, also when he had to literally pull me up (sometimes from the toilet) and support me when my arthritis pain was so bad.
Looking back, I have been thinking a lot of why I was so sad at that moment. I don’t usually get so emotional easily. I felt like I had ‘given up’, like I had lost the ‘battle’ and hadn’t fought hard enough. Because when you fight hard enough, you can beat this, right?
That narrative of ‘fighting a disease’ or ‘winning or losing the battle’ is often used when talking about living with a chronic disease. We have to ‘fight against it’ or ‘be strong and brave’. This is also used in media reports, e.g. in obituaries: ‘she has fought against it til the end’ or ‘it was not a fair fight’ (is it ever a ‘fair’ fight then?).
Such a narrative feeds the idea that ‘being sick’ and ‘becoming better’ or ‘curing’ largely depends on one’s own efforts. All you have to do is fight enough to conquer disease! One has to be brave and heroicly arm oneself. Keep fighting, keep functioning and don’t let it get you down!
All those years of ‘fighting my diseases’ made me not really face up to my diagnoses and also ‘hide’ them. I carried on like a train as if nothing was the matter. This wouldn’t beat me, this wouldn’t prevent me from leading my life the way I wanted it! I ‘fought’ to stay working, while the water was up to my neck. I ‘fought’ to fulfill social expectations, while I was exhausted. I ‘fought’ to keep smiling, while I was dying inside of pain.
Til I paid the price and I hit the wall so hard that I was really forced to stop working a couple of years ago. Knock out! That narrative of ‘fighting’ probably also contributed to the fact that it took me a couple of years before I could really come to terms (rather forcefully) with the verdict of an operation.
The operation also turned out more complicated than foreseen. During the keyhole operation the surgeons discovered that my colon was so swollen and inflamed that it had to be removed fully instead of partially. And that was not possible through a keyhole operation, so they proceeded to an open belly surgery. With nine days in hospital, much more pain and a longer revalidation afterwards (the hospital ‘vegan’ food was a disaster btw, but maybe more on that in another post).
So that narrative of ‘fighting’ has a downside. It prevents acceptation, accepting your diagnosis. And not ‘accepting’ the diagnosis of a chronic disease can have a negative impact on the physical course of the disease, but also on the mental well-being. Sometimes you don’t have to obstinately fight, but rather ‘listen to your body’. Know what your limitations are and live accordingly. Dare to say ‘no’, when you’re not okay. Take the time to rest when it’s needed, and accept that your life as a chronically ill person looks different than that of a healthy person.
Does that mean you just have to lie on the couch all day and ‘give up’? Of course not. You do what you can, but you also listen to your body. Yes, it’s a cliche, but it is one that’s as solid as rock. Because if you don’t, it will eventually come back to bite you in the end anyway.
The last couple of years, I have made a lot of progress in ‘accepting’ my diseases, but it’s an arduous process (and opening up and writing about it, is part of that process). Sometimes I feel it’s more difficult than living with the diseases themselves. Crohn’s and Ankylosing Spondylitis are my life companions and I will never be able to beat them. I have to accept that with every move and all the plans I make, they will always be there.
Note – previously published in Dutch on Spondygazet.