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November 4, 2023

The Reality Of Living With An Invisible Illness

Photo by Michelle Leman on Pexels.

Social media has become a platform for people from with chronic illnesses to connect globally, share experiences, learn about new healing methods, and cultivate community. I personally used to be one of these individuals, who share their lives over social media about their struggles with their disease. I was born with Celiac disease but was undiagnosed until I was 22. I shifted the focus of my Instagram account to my food and Celiacs when I signed up for a holistic health coaching training and started to learn more about our health, guts and the food we eat. It took me a few years to realise how I was  portraying my illness through rose-colored glasses.

This just happens to be where I am in my journey right now.

If you look at me, you don’t see anything different. My coworkers wouldn’t even know I struggle from an invisible disease if they wouldn’t see me with my “gluten free” packaging.

That’s the thing about having an invisible illness, most of your struggles are private.  But just because you don’t see our pain (and most of us don’t showcase it to the world), it doesn’t mean it isn’t there. Here’s what you missed.

As a child I was always sick. I had lung problems, severe random allergic reactions, unbearable headaches, constipation, abdominal bloating, iron deficiency, crampy abdominal pain, acne and mysterious inflammations everywhere in my body. I spent many time in hospitals where doctors would perform all type of check ups on me, only to find no answer to why I feel this way. My organs never showed any sign of illness or malfunction.  I was sent to a psychologist because my doctor suspected me to be hypochondriac.

It was only by accident that I discovered about my Celiacs when I was 22. I read an article about adult acne which blamed lactose intolerance as the cause of this never-ending teenage nightmare. I visited my new PD asking if I could get checked for lactose intolerance. At first she tried to convince me it is silly to believe these articles, but just to make me feel heared, in the end she signed me up. When I had my test it turned out I am intolerant to kazein and have Celiacs. Looking back at my life, it all made sense. All my symptoms my doctors never found the cause of, were because of Celiac disease (including my anxiety and depression) and caused the secondary lactose and kazein intolerance.

By this time my body was so damaged (my diet growing up basically consisted of gluten and dairy products) that I had trouble to digest almost every type of food. It took me a good 2 years of a complete vegan, gluten free gentle diet to heal my gut to a level where I could incorporate more complex food that I could properly digest. I had to take probiotics to help heal my damaged gut.

But it’s not only my Celiacs, there’s another disease lurking around, even less people know about – my acute kidney disease, an abrupt (within hours) decrease in kidney function, which encompasses both injury (structural damage) and impairment (loss of function). First time it happened when I was 23, not long after Christmas. I dropped on the floor, was vomiting green and couldn’t even support myself sitting. Only when I was taken to the ER, and hospitalized for weeks, we found out that I had just minutes before my whole circulation would collapse, too. Since then it keeps randomly paying a visit every couple of years, to remind me how lucky I am to be still alive. I have my methods to keep my kidneys in check and well hydrated, but you never know when the next bomb is dropped on me.

If you look at my Facebook posts from those years, you’ll see me smiling with friends and family.  You’ll see me celebrating graduation, starting my “adult life” with my first job, my first rented apartment, vacationing and hiking, as anyone else. You’ll see me getting engaged and being promoted at work, graduating with a second degree and upgrading my life gradually.

You won’t see me wasting weekends and falling asleep at 6:30 exhausted after work.  You won’t see me doubled over on the floor in pain. You won’t see my laying in my own vomit on the kitchen floor.  You won’t see me being pushed around in a wheelchair with a catheter and a transparent plastic bag hanging on my side, where they count the amount of urine I produce each day.

What you do not see is me taking one day of this life for granted.  What you will see is me making the most out of the life I have because I have to miss out on so many things, I want to savor all that I can and you never know when I drop on the floor again, and there might be a time when I won’t be able to get up again.

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