By Inês Mália Sarmento

No matter what, you will be welcomed in this community

I believe there is this belief among disabled – even non-disabled – and chronically ill people; that in order to be part of the disability community, a person has to be an activist or advocate, not just for themselves, but for other disabled people. I certainly had this belief deeply ingrained into my brain, for the longest time, which prevented me from engaging with the community right from the start. I had a realization after a while in this journey of accepting my disability, so let me start from the beginning.

In 2019, I took it upon myself to try to figure out what the hell was wrong with me, what could be so wrong, that even with my body at its fittest, I would end up in bed for God knows how many days or nights to come. It was unpredictable, and it didn’t make sense to me; whatsoever.  I now know there is nothing wrong with being disabled and/or chronically ill. 

I was determined to not give up on myself; I was not going to spend my life in doubt; I owed it to myself to have at least an answer for one of the thousands of questions floating in the stagnant pond that was in my head for several days, as I ruminated on the same thing over and over again.  Every doctor gave up after a while., I was too complex, I was faking, I was not in the right specialty. I have probably seen hundreds of doctors in those past years, and they were all clueless. One of the most ridiculous things I heard from a doctor’s mouth was that she would win a Nobel Prize if she ever got to figure out what I had. I knew what I didn’t have; I didn’t have a degree, but I had willpower and anger, and it consumed me like acid inside. I was also afraid, but that wasn’t going to stop me.

“Every doctor gave up after a while., I was too complex, I was faking, I was not in the right specialty. I have probably seen hundreds of doctors in those past years, and they were all clueless.”

Inês Mália Sarmento

Due to having a special interest in medicine and the human body since I was a little child, I’ve acquired a good amount of knowledge on these areas along the years. I knew my fainting was related to both the brain and the heart, so I would go to the library every week; to pick up books on these. I was able to narrow down to the topic of the autonomic nervous system, thanks to an ER doctor; telling me that he knew a girl up north in the country; that had the exact same symptoms as me. He explained that it was due to an extra sensitive autonomic nervous system. I also went over my medical exams binder, and read each word in each and every one of them. I started to notice little things here and there, that doctors just brushed off and thought they weren’t relevant enough to cause my symptoms. I found out my orthopedic doctor diagnosed me with Marfan’s. He was the first doctor I saw, back in 2015; when I first started fainting. That directed me to research the connective tissue.

I started getting worse by the day, and everyone thought it was anxiety. I refused to accept that; There was no way anxiety was causing all this trouble – there was just no way. In the beginning of March, I came across Postural orthostatic tachycardia syndrome (POTS), and was able to find the link to Ehlers-Danlos syndrome (EDS). After convincing my parents to take me to a cardiologist, these diagnoses soon became official, and the mystery that I was longing to understand uncovered itself. No exam had ever detected my POTS because I was never hooked to machines while I was fainting.

It was in the middle of all the fear I felt of uncertainty of the future, and the figuring out what was up with my health, that I wrote the song “Who Cares, Who Cares”. It was based on what I was feeling at that very moment. I felt like I was drowning in fear; and that trusting myself was the last resource I had. Trusting the newfound knowledge I gained gave me determination and led me to discover what was going on with my health, which medical professionals eventually confirmed. My opinion mattered.

“I felt like I was drowning in fear; and that trusting myself was the last resource I had. Trusting the newfound knowledge I gained gave me determination and led me to discover what was going on with my health, which medical professionals eventually confirmed. My opinion mattered.“

Inês Mália Sarmento

The relationship I developed with music was not only therapeutic but it also became the means through which I got to express what I felt deep down in my core. I would start writing; not just for me, but for others, others that hadn’t found someone who got them, just like I hadn’t found anyone who understood me before. I didn’t want to go through this alone anymore, so I started searching on YouTube and Instagram; until I found my people.

I learned a lot just by talking with creators and activists on Instagram. I would listen to their stories and have this bittersweet feeling, because although I was happy for finding people who understood what I went, and was, going through, they also had suffered at the hands of the same broken system that I too was a victim of. At this point, I knew I was part of a community. I was part of something big, a support system. I had never felt more supported in my life.

I also learned that it is ok to not want to share my experience to be part of this community, because so many others choose not to, and they are still as much a part of it as I am. This community welcomed me with open arms, with no obligations but to share the love – and that’s exactly what I did.

I found my voice in the community by being supportive to others. I wasn’t actively advocating for anyone, I was just there, like others were for me. Sometimes just a single comment is enough to make someone’s day. And when I didn’t have the spoons to write, I would just type a heart emoji, and that was just as valid as an entire paragraph.

With all of this, I want to say no matter what point of your journey you are, you are welcome to be part of the chronically ill and disability communities. You are welcome just to scroll through posts, you are welcome just to watch videos, you are welcome just to leave likes or follow others. I’m here to tell you that you do not need to be an activist to be part of these communities, and that you will receive love from it, just by being the amazing human being that you are, because just by existing, our energy makes a difference in this world.

“…no matter what point of your journey you are, you are welcome to be part of the chronically ill and disability communities. You are welcome just to scroll through posts, you are welcome just to watch videos, you are welcome just to leave likes or follow others. I’m here to tell you that you do not need to be an activist to be part of these communities, and that you will receive love from it, just by being the amazing human being that you are, because just by existing, our energy makes a difference in this world.”

Inês Mália Sarmento

Inês Mália Sarmento

[Image Description: Inês is a white Portuguese woman. She is looking at a lamp, the only source of light in the photo, that is on the left upper corner of the picture. She has her right hand close to her face. It’s a white and black photograph.]