“To share your weakness is to make yourself vulnerable; to make yourself vulnerable is to show your strength” by Criss Jami.
So. Here I am opening my heart and letting you in, hoping this will inspire and help anyone that is going through something similar.
I have to admit it has been a very difficult journey especially those past two years, life didn’t go the way I planned at all.
Let’s start with an important disclaimer, most of my conditions start with the word “chronic”, which meant it’s not life-threatening and also meant that I was left to manage my symptoms on my own from that point on.
Chronic conditions meant dealing with Drs continuously, learning medical terms of your conditions and your medication, and establishing a personal connection with your Drs so they can remember you the next time they see you. This process is not easy at all, especially when you are at your weakest and don’t have the mental capacity for anything but survival, you meet a stranger for the first time and talk to them about your hardest days. No one teaches you how to manage it, it is not something you learn in school or even learn from your parents, there is no protocol for it.
It wasn’t easy starting this chronic illness journey as a kid but I liked the idea of being strong, responsible and taking care of things without showing my weakness to others, I saw it as my superpower.
Having a pharmacist in the family made it easier to keep it a secret because I didn’t have to ask for help from doctors who are total strangers when things get out of control. Even if I needed help from a doctor they treated me differently because my mum was in the medical field. I have noticed early on that doctors talk to other medical professionals differently than they would to a regular patient that lacks awareness about their condition. The conversation becomes more intellectual and one consultation can be a lot more fruitful. I consider myself lucky at least I had a professional at my service 24/7 that gave me a sense of security because I knew she can manage anything my body would come up with.
Not having to run out to the hospital in the middle of the night was defiantly a blessing. Because with every run to the hospital you end up dealing with trauma again and again.
I was managing 5 major chronic symptoms by the age of 22 that no one had any idea where they come from so they said it was just stress, I was still at school, I kept hoping that once I finish school all the stress will be gone and the symptoms will eventually disappear, but as long as I could manage things without needing help from others, I was fine. I got used to it, it became second nature, I didn’t have to think about it unless someone commented on my medication or my symptoms. I was also doing everything I can to manage my stress, I was doing art constantly, I exercised and I liked cooking and making handcrafts.
I like to believe that I carried it well, I did not complain, and no one could ever tell I was sick except if they saw me take meds or in cases of emergencies where I had to ask for assistance. Like all chronic conditions, there are good days and some really bad ones but to me as long as no one saw the bad days it didn’t mean anything.
In 2018, my symptoms started getting out of control again so I had to go back to seek medical help again. I was 29 when I found out that I had a cyst on one of my ovaries and they told me I had to start taking hormonal medication to stop the blood supply that is filling up that cyst. That synthetic progesterone pill triggered all the rest of my body, even things that I never had a problem with start failing the synthetic hormones triggered, hiding my symptoms became impossible and managing them took up all my day I had nothing left in the tank to work or enjoy life.
They found out that I not only have a cyst but its also adhesions on my intestines and ovaries, a condition called Deep Infiltrating Endometriosis (DIE for short, Haha for real its a condition called “DIE” LOL).
The symptoms were coming at me every day with a new thing, neurological symptoms, eye problems, balance problems and digestion problems, everything was so hard and I was in great shock but I never allowed myself to feel negative about it, I said at least I am alive, I don’t have a feeding tube yet so I shouldn’t be sad. I still kept hiding my suffering from even the nearest and dearest people to me, I didn’t want to upset them or worry them with this news.
A few of the symptoms became permanent, a couple of the doctors that I had seen in the past year were 100% sure that this is an autoimmune disease attacking the soft tissue of my body (yet to be identified and managed).
Anyway, if a symptom lasted longer than a day or two I would adapt to getting used to it, managing and coping with it and start to get on with my life. I wake up every morning with no expectations and see how things would go, that meant I couldn’t plan my days ahead anymore, any planning I did lead to more disappointments. At first, I was really angry, I hated my body for being so fragile and this just made it so much more difficult to live. I had to learn to love my body and accept the way things as they come. I kept begging doctors to help me but no one seemed to care, it was heartbreaking.
I ran out of positive thoughts, I had to allow myself to grieve the loss of my skills, my perfect eyesight and my senses, I had to stop pretending that I carried it all too well and that it wasn’t as heavy as it really is.
This grounding, inner peace finding journey has taken around a year to get to where I am today, to make peace with most of the things that life throws at me. Having enough peace to stop looking for answers every minute of every day and start living the good times when they come. I realised I can only take life as it comes. One day at the time, one hour at the time and one minute at the time. It is easier said than done.
I still struggle sometimes, the uncontrollable symptoms, the loneliness of this journey and the horrible doctors that I have to deal with most of the time, it all gets to me sometimes. But I rest and refuel to continue trying as hard as I can again and again.
I am grateful for it all, this journey is forcing me every day to walk in the direction of finding my peace. It’s a tough training ground, but I’m slowly getting the hang of it.