Lessons Learned from Catastrophic Illness

As you may or may not know, I’m currently in the midst of the long recovery process from a very scary hospitalization. What started out as a small cold about a month ago escalated into something far more serious, leading to a 10-day hospitalization in the ICU at University Hospital in London followed by weeks upon weeks of bed rest at home as I slowly regain my strength and energy. Laying in the ICU one night, awaiting sleep to come after a hard respiratory physio session, I decided this experience didn’t have to be all horror and awfulness — there were lessons to be learned and knowledge to be imparted afterwards. So, for your viewing pleasure, here are some things I learned over the past month on surviving an encounter with catastrophic illness.

1) Nurses are your greatest allies.

Far too often, patients take out their anxiety and frustrations on their nurses, simply because they happen to be closest people around. This is, of course, the wrong way to look at it: when in the hospital, your closest and best friend in the whole wide world is your nurse. I think people sometimes confuse the nurse with “authority” because it is their job to dole out whatever punishment the doctors have bestowed upon them, however, they are also the people who can make your stay far more comfortable. Treat your nurse with buckets-full of kindness and respect and always, always, try and make their job easier. If you do, they are sure to shower you with some pretty awesome rewards like saving snacks for you off the meal cart and helping you get custom food ordered for your future meals. Hate orange jello but love vanilla pudding? Your nurse can make that happen, if you ask nicely. But the benefits go way beyond just food, as nurses often have access to insider information, like discussions happening between doctors that you’re not privy to, so building a friendly rapport with your nurse can be hugely beneficial in the information department. Lastly, these are people who will treat you with near-unlimited kindness and converse with you when you’re lonely, provided you treat them with the same respect. Take care of your nurse and they will take care of you 10-fold. Guaranteed.

Creepy doctor shushing someone
Listen, I’m not really a doctor. Don’t tell anyone, okay?

2) Doctors are humans. Very intelligent humans, but humans none the less.

I’m not going to sugar coat this: doctors make mistakes all the time. This is not necessarily a reflection of my time spent in the ICU, but a simple reality. Doctors are faced with making serious decisions with limited (and sometimes flawed) information at a moments notice with tons of patients every day. It is no surprise that they will make mistakes from time to time, whether it be because they forgot a minuscule detail or you have not been fully open and honest with them about your symptoms. But rather than just getting angry or frustrated, why not make the doctor’s life a little easier? The whole patient/doctor relationship works best when the two of you are working together, as a team, as opposed to the doctor simply diagnosing you from the notes on the chart. Be sure to tell them everything that’s going on, even if you don’t think it is important. Also make sure to provide history (even anecdotal) to explain symptoms so they don’t go trying to fix the wrong thing.

This is really where self-advocacy in the hospital becomes so important — if a doctor tells you something that doesn’t sound right, politely challenge them and try providing additional information to steer them back in the right direction. Accepting 100% of what the doctors tell you can be problematic, especially when the cure is sometimes worse than the cause. At the same time, contradicting and fighting the doctor at every turn will likely just annoy them and, honestly, do you feel like helping people who annoy you? It’s a delicate balance, for sure, but working with the doctor is infinitely better than working for them.

3) Life is systems within systems — learn to not just to navigate them, but to manage them.

Something I learned real quick upon my release from the hospital is that I was entering a world of complex and overlapping systems that rarely work how they are designed. For me, this meant attempting to synthesize attendant care, nursing visits, family support, equipment purchases, increased training, and trying to beat the illness all at the same time. Anyone who thinks they may be looking at chronic illness or extended hospital stays in the future will really benefit from spending some time developing their managerial and organizational skills before catastrophe hits, when you have the energy and focus to learn, rather than scrambling to put it together in process. There are tons and tons of books and courses and seminars offered through your local library on the subject (even if it’s more focused on managing a business or organization), so look into it and try developing these skills. I found it to be hugely important.

4) There is no I in “team,” but there is in “live.”

Take responsibility for your health. This is something I fear I hadn’t been doing enough of leading up to the illness, which could be a contributing factor to the length of my recovery. The problem is that we all want to live beyond our limits…in fact, on a daily basis we are challenged (and sometimes ordered) to do just that. On the one hand, it is urgently important that we identify what our limits are (whether it be physically, emotionally or intellectually) and then actively work at living within those guidelines. As the saying goes, a candle that burns brightest often burns out the fastest. But on the other hand, we need to admit to ourselves, and I mean genuinely deep down in your guts, that we are all feeble, fragile little creatures who will not live forever. This may seem grim, but there are steps we can take to extend that life as long as possible. Eating right, exercise, blah, blah, blah. I hate to admit it, but those damn ParticpACTION commercials were true. But it’s not enough to just say you will get healthy. Genuinely take responsibility for yourself and your health and maybe you won’t end up in the hospital and this whole list will be useless to you!

5) You can watch the Ninja Turtles Trilogy in one day. You cannot watch the Lord of the Rings Trilogy in one day.

Bed rest is boring. I honestly think I was starting to come down with cabin fever by day three. The problem with the boredom is it makes you want to do something, which is the exact opposite of what bed rest is supposed to be all about. Luckily my lack of energy helped keep me in check, as I couldn’t sit up in my chair longer than 30 minutes before I had to lay down again and, for some reason, no one was willing to take me to the local pub in a hospital bed. I need to get new friends. But in all seriousness, find something low impact to entertain yourself long term. For me, this was watching movies. I discovered there were a lot of trilogies you could marathon in one day. Unfortunately, the Lord of the Rings Extended Edition is not one of those trilogies. Nor is the Star Wars Hexology, but who even watches the first three? The key here though is to ensure that the entertainment is enough to keep you occupied without interfering with your ability to rest and, potentially, sleep. For me, this meant rewatching movies I had seen a million times so that I wasn’t forcing myself to stay awake to see what happens, while at the same time, I was getting a nostalgic kick from childhood and high school memories associated with the flicks.

6) Make it about them, not about you.

When someone encounters a catastrophic illness and ends up in the hospital, everyone with even the slightest connection to them are hungry for details about what is happening and how they are doing. This is fine, on the surface, because it shows that you care about the person and would be upset if something bad happened. The problem is that in crisis situations there is inevitably one member of the family who becomes the sole “communicator” of news, which seems to usually end up being either the parent or the significant other of the person who is sick. This means that not only do they need to support and worry about their sick loved one, but they are also responsible for being the sole touch point to the outside world, repeating the grim news over and over again. As you can imagine, this just makes a stressful situation even more precarious. The biggest issue here, though, is that we all seem to have this weird habit of trying to relate to these communicators, and the stresses their facing, by sharing our own stresses or worries. I guess it’s like that whole misery loves company thing? The problem is rather than comforting the communicator this merely stresses them out more (or outright angers them) because everything they have is focused on getting their loved one through this illness, and now it feels like you are merely adding another log to a very, very crowded fireplace. Ultimately, the best way you can support these people from the outside is keeping it about the person who is sick — ask how they are doing, ask if you can help, offer to visit, etc. And if they would like you to visit, note that visits require energy and sometimes there just isn’t any energy to spare, use that time to help normalize the situation — chat about things you would normally talk about (sports, movies, funny things that happened at work, etc) to act as an escape from the stresses and rotten feelings rather than just reminding them that they’re sick and stuck in the hospital. When all is said and done, just try your hardest not to add to their pile of stress.

7) The most important thing in life is friends and family. Never forget.

I promised myself this wouldn’t get too sappy, as it has already been a pretty emotional month for me, but I wanted to end this by saying something we all know but rarely seem to genuinely acknowledge. In this life, there is nothing more important than friends and family. When all the cards are down and you are laying in that hospital bed, wondering whether or not you will make it through this, the only thing that matters are those standing next to you, holding your hand. Not money, not fame, not power. The only thing that matters in that moment are those who love and care about you.

We all know this. We say all the time how important our friends are to us, or our family. How we’d do anything for them. But do we? Will we? Consider the average day in your life — how much of it is dedicated to strengthening your relationship with your friends and family? How much energy do you put into these relationships? And how much do you simply put into yourself? In making money? I think sometimes we forget that we are communal animals, we thrive in tight-knit packs composed of those looking out for us, just as we look out for those we care about. Perhaps that is the true way to happiness — in spending time each and every day building our pack, strengthening our bonds, and supporting those around us rather than just spending time on ourselves. Love your friends and family, yes, but more than that be there for them and, if you nurture and strengthen those relationships then I promise they will be there for you in your time of need. And in that terrifying and horrible moment, being surrounded by that genuine and sincere love can make all the difference.

So thank you to my family and everyone else out there who cares about me. If nothing else, this experience has taught me to never take you for granted again.