First, an apology. Some of you are good friends of mine who will probably want to know why I haven't told you about this before posting it so publicly. To you, I'm sorry, but hopefully as you read, you might get to see some of what has gone on for me.
And many of you will be surprised, as I probably haven't "seemed" sick. In fact, most days I looked normal.
I didn't even look sick enough for the doctors to take much notice... at first. My typical experience has been that a new doctor interviews me, doesn't think there is much to it, is kind of dismissive, then sees my blood tests and realises that, no, I'm actually not making this up.
So, what is wrong?
I'll start by allaying some concerns you might have: no, this isn't terminal. No, it's not going to kill me.
A little over a year ago, I started getting stomach cramps. It's hazy now, but I think it started after I had a one-off tummy bug. I have never been someone who had huge energy reserves or a lot of stamina, but it seemed to get worse: I was in a funk I couldn't get out of, and tired all the time.
Eventually, I finally listened to my wife and went to the doctor. This is where the "well, I can't see anything wrong" bit comes in, but to his credit, my doctor was someone who listened properly, and even got a stool sample done at my request. (Apologies to those who don't enjoy this sort of thing, but yeah, I'm going to have to talk about poop. Welcome to my life). This was the first breakthrough, as it showed increased markers for inflammatory bowel disease.
Many of you probably haven't heard of Inflammatory Bowel Disease (or "IBD"), but it's not the same thing as the more commonly-mentioned Irritable Bowel Syndrome (IBS). It's actually less fun. IBD has two types: Crohns Disease and Ulcerative Colitis. If you care about the details, feel free to google the terms, but pretty much it ranges from tummy pain and discomfort right up to ulcers, blood in your stools, lethargy, fevers, diarrhoea, vomiting, having to have parts of your colon removed... I could have it much worse.
So, fast forward through a year of suckiness and sickness, and I'm down to working only four days a week, because I get so exhausted (did I mention ongoing anaemia?) and simply couldn't handle more than that. Even then, most days I'd be struggling to get through eight hours, or making mistakes, or forgetting things, or all three. And, making as many as six visits to the toilet in a day to poop, often urgently, and often uncomfortably.
And, the emotional drain has been so bad that my doctor has me on antidepressants. Yes, antidepressants, as in those things that you give to people with mental problems. Want a phrase that makes you feel really special about yourself? Try, "I have a mental illness." While our culture has become accepting of a lot of things (well, on the surface and in name at least), mental illness is still one of those things that we unconsciously (or even consciously) consider anathema. I've always been a friendly person and have tended to be emotionally stable – I'd even go so far to say that I was pretty unflappable in most situations, and almost never let my temper get the better of me. But this disease? My wife described me as a "different person", because I would snap at anything, yell at the kids, fail to control my emotions. Not fun.
I have friends who have had to deal with far worse mental disorders than mild depression, and now I have a lot more compassion for them. It's not a fun thing having to come to terms with the idea that "There is something wrong with me." Even physical disorders are something that you can "externalise" – i.e. convince yourself that it's a problem with "my body" rather than "me" – but you don't get such a luxury when the problem is mental. And, as I have learned, you really cannot just "talk yourself out of it", you can't "get over it". While I had grown up a bit from my younger days when I thought mental issues were just that – in your head – I now learned first-hand that the reality is that our physical, mental, emotional, and spiritual health are all interlinked and inter-dependant. There are times when you need to treat a mental disease with a physical cure – in my case, this was especially literal, because my emotional state was primarily a result of my physical condition. (There are a number of studies coming out now confirming that mental health is intimately linked with gut health – your gut is so important to your overall well-being that it can send "I am not ok" signals that affect everything else).
It was hard for me to admit that I needed antidepressants. There was a time when I would have said that was all wrong, and if I'm honest, if it wasn't such a direct physical cause, I might not have been so accepting. But the reality of being so sick made it an obvious choice, and in fact it was one of the best decisions we made, as after a few weeks, I finally felt like myself again. I could function emotionally again, and emotional lethargy and anger didn't control me so much.
Finally – after two colonoscopies (no, they're not pleasant), innumerable blood tests, an MRI, and almost every other test I could think of – I had the specialists at the hospital confirm that it's Crohns disease and that they are going to give me drugs to treat it. Specifically, immunosuppressants and steroids – so I get to have a weakened immune system. And apparently I'll have to stay on those drugs indefinitely. As in, for the rest of life.
But, after the year I've had, that actually feels like a win. It will be a whole lot better than what I have been living with.
And yet, I didn't "look" sick. Most days I was able to act normally. Except for when I ended up in such a bad state that the doctor admitted me to hospital for three days.
One of the things you learn with something like this is the surprising number of people you know who also have "silent" illnesses, or who suffered through things you didn't know anything about. I feel acutely aware of human frailty at the moment – my own and others'.
Did I want to tell the world about this? No, not really. It's not fun to experience, and it's not fun to talk about. Especially the need to be on antidepressants – none of us want to admit that we're somehow broken.
But, you know what? Everyone is broken somehow. It's called being human. Everyone has issues you don't know about. Maybe you disagree with them somehow, but perhaps what you don't know is how and why they got where they are. Maybe if you knew that, you might be a little more understanding.
So if someone says, "I'm sick" (for whatever reason), don't respond with an "Oh," and then stop talking to them. If someone has issues, and is gutsy enough to share them with you – or worse, circumstances force them to talk about something when they don't want to – then please be understanding. Respond with kindness, and don't say that "It will be all right one day", because maybe it won't. Maybe, like me, they have a disease for which there isn't a cure. I am hoping that one day someone finds a real solution and a real cure for Crohns – and I have done enough reading to know that there are people trying – but in the meantime, I have to live with the fact that I'm going to be taking medicines for the rest of my life. So no, it probably isn't going to be "all right". I am fine with it, and simply, this is my reality now, as it is for probably a lot more people than you realise. Secret struggles are hard, so please never respond with anything but compassion.
Admitting brokenness takes courage. We need to applaud it, especially in a day where image is everything, and everyone has a fake social media persona. Most people only show the good bits. I have massive, massive respect for the person who is willing to drop the masks and say, "You know what, I'm actually not ok." You would be surprised at what people have to deal with behind the external image of someone who has it all together. I've known enough people to know that shit happens to everyone. Usually really horrible shit.
So, this is me. I'm living with a chronic illness, even though you probably wouldn't see it. It sucks, but maybe it is making me a better person (if a more tired one), so, like everything in life, it's not all negative but is a mixture of both the bad and the good. If nothing else, I've learned that I don't have the solutions to every problem.
I hope this will help someone.
