Throughout my whole life up until my pregnancy, the doctors I visited were a GP, a gynaecologist, a short time with a physiotherapist and eye doctors (on the rare occasion) to update my spec prescription. Up until then, I was practically oblivious to the world of medicines, tests and treatments, and I probably stepped into a hospital a handful of times throughout my life. Nothing prepared me for the s*#tstorm that started the day the nurse noticed a ‘problem’ with my baby’s kidneys at 20 weeks into my pregnancy.
I will never forget that moment, as I watched the nurse’s face change, with a series of umm’s, oh’s, head shaking and eventual exiting of the room. It was that very moment that set me up to a state of over thinking and cold sweating the moment I see a medical practitioner’s face change from their resting face…. try as they might, they don’t always hide it, and there have been many of those moments these past 6 years.
The hard truth is that when it comes to a medical diagnosis you don’t get a heads up, any warnings or a memo, it’s just given to you and you are never prepared for that news.
There are 2 ways that you can deal with it, embrace it and start asking questions or go into denial. It’s usually the latter that prevails until you come around to realising and accepting the facts. And that could take a while. It happened to me. I was angry and in denial for a very long time for both life changing diagnosis’ – my son’s rare syndrome and chronic kidney disease as well as the diagnosis of my breast cancer.
But what were my options?
To keep denying things and let things fall to pieces because I was not ready to accept them? (It’s not like anything was going to change for the better, in fact they would probably change for the worst). Or take control of what could actually be done with the facts I had.
Allow me to start with my opinion on what NOT to do:
For the love of all things good in the world and your sanity… DO NOT GOOGLE ANYTHING.
When I googled Prune Belly Syndrome, I read about the what the syndrome was identified by and I still could not accept that it was happening to my son and it only made me more upset. When I was diagnosed with breast cancer, I made the mistake again and I was sent into an internet wormhole. I just sat in front of my computer and cried and cried. It did me absolutely no good on either accounts. After all this time, I have learned more about Henry’s condition as well as cancer and knowing full well how individual each diagnosis and illness is, I only draw out the information I feel is useful without taking everything as truth or applicable.
Do not expect to learn and understand everything overnight.
You will feel overwhelmed and that’s ok. Try not to be hard on yourself by trying to make sure you know everything straight away. Giving yourself time allows you to take things in gradually and allows you understand things better.
More often than not, you would have probably taken some tests that are meant to give you some kind of answers, but until you receive those results you might as well be living on another planet.
In the beginning, positivity was the furthest thing from my mind. All I could think of was ‘why me?’, ‘this isn’t really happening’, ‘this will go away soon’. But it didn’t. As hard as I tried and thought and wished, not one of the diagnosis’ changed, and when I realised that I also realised that I was the one that needed to change. I needed a new perspective and mindset. I also started to realise that my own negativity was only returning negativity into my life. And most importantly, I started to notice how much my child fed off of this negativity and I knew that one of the ways I could help him stay positive, was to be positive myself.
Ways that help me stay positive during a diagnosis.
Allow time to be angry and negative.
This may sound counterproductive, but I assure you, it is not. There is no turning back from the truth, it is what it is and nothing is going to make it ok or any easier to deal with, but you have to live. Giving your self the time to be angry allows you get it out of your system to make room for positivity. Give your anger space to come out without pushing the reality of things away or inward or you may end up prolonging the start of the road to dealing and healing.
Stop and think about what is fact over what is in your mind.
Unless the doctors tell you so or blood results have shown otherwise, try not to worry too much about what is not fact. Believe me, I know it is not easy, but worrying over what may or may not be, takes away from what is and eats away at your sanity. You need every ounce of sanity to be a parent to your ill child, partner, friends, self, etc.
Write down any questions or concerns that you may have.
I found it very helpful to actually see things on paper. The past few years I have dedicated a diary to Henry’s medical care (a perfect reason to own another notebook). Apart from appointments, I jot down medication updates, when I notice symptoms, and questions that I have. It would be otherwise impossible to remember everything. I can then take this with me to his clinic appointments to go through things with his doctor. I also feel that when I write something down, it has a way of becoming clearer. And here’s why: when you over think things in your mind, asking yourself question after question, it gets jumbled up with other things like-what to cook for dinner, the laundry that needs folding, the grocery list, collecting medicines, etc, etc. When you write it down, it’s not cluttered by anything else and it helps to ease some of that overwhelming feeling. Remember not to be afraid to ask questions, and that every question is important.
Direct your focus to 1-3 things that are good in your life.
There is no arguing the fact that it will be a difficult time and you will feel like your life is falling apart. It is normal, and it is ok. Even if it for a fleeting minute, think of something that is good that moment in your life. Because although it might feel like it, not everything is bad. Focusing on good things, even for a short time, eases your mind away from the negativity and the anger you will feel.
Take things one day at a time.
When I stopped putting so much pressure on plans and simplifying routines to leave room for unexpected changes, I wasn’t setting myself up for disappointment and feelings of failure every time plans changed. And as cliche as it might sound, make the most of each day – if all is well and you feel like doing something, there is no better time than now and today.
I try my best to focus on the above points for every appointment or hospital visit, blood test, hospital admission, or infection, because you just never know when that diagnosis will be blurted out. I have been around this block a few times and I have learned that the best thing I can do for myself and for my family is to do whatever it took to stay positive, and I hope it will help you too.