This month, our guest blogger Patricia Gómez shines a light on the importance of transparency, advocacy and accessibility for businesses big and small. Through her own experiences with chronic illness, she shares the importance of acceptance and inclusion, as well as the power that words have to shape our own narratives.
It has always been there. But it wasn’t until I landed in a new country and started my new life in Winnipeg that I got a diagnosis.
IBS and Adenomyosis.
A diagnosis that no doctors were 100% confident in saying either and which I am still getting answers for. “I’ve never seen something like this in my 30 years of practice” or “Could we have consent to show these pictures to students?”- weren’t very reassuring either.
The doctor appointments, the thousand tests, the hope, the pain, the fear. The hundreds of times we get “sent home” because they can’t find anything or they tell us it’s nothing, it’s all in our heads.
Chronic illnesses might be invisible but are not imaginary.
Advocating for myself as a young woman, half naked and vulnerable, being examined and talked down by a gynecologist making fun of my pain…saying your truth inside and outside of the exam room, that was one of the hardest things I had to do.
I was judged and questioned about birth control and other personal choices by doctors while being in an operating table, with those gowns that strip off your dignity and about to be sedated to have a complicated procedure. With an IV and tears running down my face I was able to speak up and not freeze for the first time. I didn’t wait to tell my boyfriend and cry at home. I politely asked, always maintaining my manners, for him to stop since this was not the time before I went into anesthesia.
It was not easy.
English is still not my first language and all I could hear was “hysteroscopy” and other “big words” for me and I wasn’t sure if I was going to die, what they needed to do to me or if I was just stupid for not knowing those words in English. I guess that when you’re learning English as a Spaniard in school they don’t tell you those words.
And of course the brain fog, tiredness and the overall anxiety would often make me forget the whole situation, leaving me with gaps to fill in my memory and again questioning if I was just going bananas.
I started asking my boyfriend to come with me to those appointments and it was one of the best things I could do. And if you are in a similar situation I encourage you to do the same, ask someone to go with you.
You are not a kid (I had to work hard to fight this thought) for asking for help. Advocating for your chronic illness is also having a support system, because as much as it hurts: it just doesn’t only affect us.
So yes, you get a diagnosis, and then what??
Chronic Illnesses are chronic, sorry.
Sometimes doctors can’t do much more than manage symptoms and they send you home with those orange bottles with the secured white cap full of pills. Is that it?
We are complex human beings, and one thing I realized quickly in this journey is that I was going to need so much more than pills to feel okay.
I was suffering from incredibly painful symptoms, excruciating pain that would make me pass out and cry on the bathroom floor, and still what hurt me the most were words.
Words from others invalidating my pain and words that I said to my own self being everything but kind and compassionate with my body.
Some days I couldn’t get dressed, the inflammation and bloating from my endo belly and IBS was so so bad the clothes wouldn’t fit. I looked like I was six months pregnant. And there is absolutely nothing wrong with being pregnant, but I wasn’t. I cried in front of the mirror full of rage and not recognizing my own reflection. I didn’t want to be in this body, I didn’t like it, it hurt. How could just a pill solve all of that?
Do you know what it’s like to be just a young woman wanting to dress up pretty in a dress for a family celebration but you just can’t stop crying because nothing fits?
Or wanting to feel confident in a business meeting but all you can wear without pain is PJs?
I wanted to do a photoshoot without having to starve myself for the fear of running back and forth to the bathroom in the middle of it or not fitting into the clothes because of bloating.
I wanted to feel sexy… But I couldn’t.
I believe that our narrative shapes our reality and that words can have the power to create positive change but also to destroy entire civilizations. Words are part of who I am and I once more go back to them to say that they can also impact our health, our recovery, our pain.
In the business world we need words, we need safe spaces to speak up, but most of all we need actions.
When I was working in a corporation, they didn’t understand this. Maybe they were not aware, maybe they were not prepared, maybe I don’t know…
I was not allowed to work from home so I just had to go into the office even when I was not feeling my best. I had a doctor’s note that a couple days a month I needed to stay at home because I was on a special medication and when I presented it to HR to ask for permission, they told me to use my vacation days.
What??!! Those were not vacations for me, I didn’t choose that, and I didn’t even have enough vacation time to use for the rest of the year, so I would need to go unpaid. It seemed unfair, I just wanted to work from home on my own rhythm for a couple of days.
I ended up going to the office and I passed out on the floor, an ambulance had to come to the building, paramedics took me to the hospital and phoned my boyfriend who was my only contact and all I had in here as an immigrant.
That whole thing took hours of disruption in the building, employees not doing their work, people worried about me, me not doing my work… yep.. But who am I to question the system, right? Well, that incident happened a couple more times ending in the ER driven by colleagues at work.
So I am going to say it one more time: in the business world we need words, we need safe spaces to speak up, we need validation and understanding but most of all we need actions.
Being accessible and inclusive means so much more than having a ramp or couple flags by the door.
There is so much more that I’d love to say but I’d like to tell you, yes you, reading these lines:
Living with chronic illness has its own challenges, but it doesn’t mean a fulfilling life is out of reach. In fact, when you have systems and strategies in place, you can navigate the ups and downs of chronic illness and live your best life.
I realized that I needed to manage my chronic illness like a CEO. Yes, sir, you decide who is on your team of doctors, who to fire and who to keep, what measures to implement for everything to run smoothly and what decisions to make, and don’t settle for anything less.
This Is Your Life, and You Should Be in Control
(At least, as much as you can.)
It’s all about little changes and having the right systems in place that can make a world of difference in someone with a chronic illness.
But that is the thing, during that time, when you cannot function, when you are in so much pain that it is hard to even breathe, it could be tough to think what it is that you need. Pain can really make us feel numb, confused, overwhelmed and completely unable to make decisions.
In those moments, you need to take care of yourself and the easier that job is, the better.
Because being prepared can make all the difference.
That is how a project named FLARE CARE was born. Alyssa Truelove (fellow chronic illness warrior and friend) and myself have been working on this project as a way to give back to our spoonies, our warriors and to keep building a better world. We wanted to help others and shared what we’ve learned and worked for us, bridging some gaps with the health system.
A Flare Care kit is a curated group of items that support your physical, mental and emotional health during a flare. It’s a tangible way to help you navigate the unpredictable nature of chronic illness.
This is your way of saving spoons (energy), to remind you why you started and to make a plan so when you have tears streaming down your face and your mind is playing against you, you have something to keep you holding on.
It is a way to advocate for your future self inside and outside of the exam room. It is a system that for once has in mind so much more than the physical symptoms. To educate your circle and build the support system you deserve. It is a way to experience a chronically fulfilled life.
And my favourite part is that it comes with 28 double sided affirmation cards, because there is always a way to change the narrative without invalidating your feelings and thoughts.
Remember, words have power, this is your chance to change your reality as well.
Thanks for reading me, this is who I am as well. It doesn’t make me more or less professional.
This is my reality sometimes. And this is also my why as an entrepreneur, because this goes beyond copy, it is about building a work system that I can thrive in and that I enjoy and not the other way around, it is about normalizing different ways to work and what “being professional” still means for lots of people.
It is about bringing awareness and advocacy so someone else can hear that this life is yours to own and absolutely possible to love it.
I am here with you,
