What even is a hidden disability?

Topics mentioned: disability and mental health, down and unable to cope

About: Nyrobi, a young artist, shares her journey with hidden disabilities, finding hope through music, forming the band ALT BLK ERA, and advocating for others.

I didn't know that non-visible disabilities existed! I now kind of see it like being a Ninja of the Disabled community. Or like a jack-in-the-box. Like, ‘BAM! Disability!’

I guess I should mention that I am part of the Disabled community. My name is Nyrobi. I’m 20 years old and I became ill, and as a result, disabled, during lockdown in November 2020.

I have myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), hypersomnolence, and postural orthostatic tachycardia syndrome (PoTS). This means that:

• I’m constantly exhausted and never feel refreshed no matter how much sleep I get.
• I have chronic pain throughout my body which is constant, all day and every day. The pain can get so excruciating at times and the intensity jumps from place to place so that sometimes I can’t walk and other times I can’t open doors.
• I get brain fog which really kicks in when I’ve been up for too long, so it becomes a struggle to think, understand and communicate with others.
• My blood doesn’t circulate as it should do, so I get dizzy spells.

You may be wondering what it's like becoming suddenly disabled after being ‘normal’ and honestly, at first, it just made no sense at all. How could I be okay one minute and not okay the next?

And then along came my illness.

The days and weeks and months merged into each other and looking back is just a haze of waking up to take meds, to eat, or to be seen by hospital doctors and consultants. It was a time of hopelessness where test after test brought no answers, and showed no indication that I’d be getting better anytime soon. The one and only thing I was able to cling to was that my latest prescription would be a med strong enough to knock out the pain.

In my world at that time, there wasn’t a night or day. I just existed.

The turning point for me was my mother coming into my room and forcing me to wake up and get out of bed! I honestly didn’t know what the hell she was thinking! She had found an organisation called Inspire Youth Arts that, because of the pandemic, was holding online songwriting sessions every Tuesday.

And so, every Tuesday at 4:45pm, like clockwork, my mother would come into my room and demand I wake up. No matter how much I told her that I was “too tired” or “in too much pain” – she just wouldn’t let up.

My mom had got it into her head that my love for music was the one thing that would give me a reason to face the pain and engage with the world again. She believed music would be the light in my long, dark, lonely tunnel.

Even though it certainly didn’t feel like it at the time, it was the best thing that she could’ve done for me. It actually completely changed my life around.

Because of the Inspire Youth Arts program, a few months later when lockdown lifted, I left the house for the first time in AGES. I had to dose up on strong pain meds, but I managed to do a small performance with my little sis. We were in a small theatre, with a small Covid-compliant audience, but it went so, so well and when I was on stage with my sis, I felt like I was living the dream!

We were then invited to join the eNGine Room record label which is a non-profit organisation run by Inspire Youth Arts.

And this is how our band ‘ALT BLK ERA’ was born!

However, as dreamy as it all was, this venture into the creative industry has felt challenging to say the least. I kept my illness a secret for a long time as I was afraid I’d be discriminated against because of it. I thought I would lose out on opportunities and that I’d be given nothing but pity in exchange.

We found that if I planned things very carefully and got the timing right, that I could get a small window of time where my meds would kick in and give me enough pain relief so that I could perform.

For those few minutes on stage, I finally feel like me again, rocking out with my sister and my band. I’m able to fully let go, with no reservations, wild, free, fun. It’s a feeling that I struggle to put into words.

Unfortunately, that feeling doesn’t last long enough.

After a 30-minute performance exhaustion would kick in and I would sleep heavily for a good few days afterwards. The pain would also punish me with even more intensity. That was the price, and it’s a price I still pay after every show.

This journey is long, difficult, frustrating and it’s been full of setbacks but...

...the GOOD NEWS is: things are slowly improving and that’s because I’m learning how to better manage my illness. I also have the total love and support of my mom and my sister who I am heavily reliant on.

The biggest thing for my mental health has been reaching a point of acceptance. That doesn’t mean that I’ve given up. It just means that I work with what my body can do instead of trying to fight against it. I’ve lost every fight I’ve had with it so far, so I had to find another way.

Another huge step in my emotional recovery has been finally feeling brave enough to talk about my illness and disability. Instead of hiding my experience, I’m at a point where I want to share my experiences and connect with others who are going through similar physical and emotional burdens as me.

This is a very personal story, but I'm really excited to share our experiences, thoughts and feelings with the world.

Our experiences.

Our pain.

Our joy.

Everything that's made us who we are today! There are quite a few bangers in there too - if I may say so myself ;)

If you have a hidden disability, I hope my story resonates with you.

I was fortunate that music became my light in the tunnel so, if you haven’t yet found one, I would encourage you to grab onto anything you can that brings you joy. Anything that will make facing the pain or the exhaustion worth it – even if it’s just for a few moments.

You might lose people along the way like I did. It hurts, but let them go - they are not meant for you.

Some days you might not think you’ll make it through. You will. There are always people you can talk to, be it family, friends, doctors, therapists, online support groups and of course, brilliant organisations like YoungMinds xx

Whatever you're going through - I'm rooting for you :)

Nyrobi 🖤