Three things I've learnt since my fibromyalgia diagnosis

Topics mentioned: disability and mental health, self-esteem

About: Hello readers, it’s wonderful to meet you.

My name is Dorneka and I’m a 20-year-old, second-generation, Black Caribbean woman. I live in Yorkshire with my mum and my vibrant dog, Katie. I love any sweet/savoury pastry, Black mythology and spiritual traditions, authoring high fantasy stories, making art digitally, and painting.

As a part of this project by YoungMinds, showcasing the scope of Black and Disabled stories, I would like to share some general thoughts and things I’ve learned that I hope will help any other Black and Disabled young person feel a deeper sense of pride in themselves.

If there is anything you take away from this letter, let it be that you are special - not because of what you do or the services you provide for others, but because of who you are at your core.

Since early childhood, my joy has always been best expressed through the magical mediums of writing and art. Crafting my own world that functioned separately from anyone else’s rules and restrictions led me to discovering my power, creativity and potential for imagination and happiness.

Following my start at high school, holding onto these things became much more important after I began to experience constant pain and tiredness.

At that point, the cause of my new symptoms was unclear. But several doctor appointments, tests and consultations later, I was diagnosed with fibromyalgia. A condition that causes widespread muscular pain, headaches, fatigue and brain fog, all of which can affect a person’s concentration and level of mobility.

Unfortunately, to help my health, I ended up having to leave high school and reduced the number of GCSEs I planned to take.

I couldn’t move to my bed without assistance, never mind dance, and yes, I stopped hanging out with my friends completely.

The days that followed were a blur of meetings, new prescriptions and medications, resting for hours, being in pain, fatigue, schooling, and even more pain.

I felt extremely alone. But my desire to make art strengthened my resolve to work with my health. Although it was difficult, I made it through the early days of fibromyalgia with help from people, resources and organisations.

On the journey to understanding myself as a Black and Disabled person, here are some things that I learnt and still carry with me. I hope they can help you too.

One thing I’ve come to acknowledge time and time over is that each and every one of us, and the humanity that we have as people is sacred. Not that ‘you are untouchable, all-knowing, and have never, ever made any mistakes’, rather ‘your identities, passions, interests and flaws do not discount you from being worthy of connection or acceptance’. I believe the latter allows for imperfections that naturally come with humanness.

I have to confess, being outdoors refreshes me in a way that nothing else does.

Whenever I stand strong in the chaos of the wind, the breeze rearranging my curls, I am supported and held by the gust. Every element of nature needs to of nature cares for and is cared for by another:

• When the clouds rain, plants are watered.
• Worms, slugs and snails that maintain the health of soil emerge from underground.
• Birds find a meal for their chicks in between the blades of grass.

Yet, it is also true that no rain brings forth drought. Drought means little water to grow crops. A reduction in crops causes a food disaster.

Without the maintenance of such key relationships, environmental breakdown occurs.

I believe the same rings true for us.

Though you are capable of self-care, there may be instances and situations where you require physical, emotional and mental input from others.

That’s okay and is definitely not something to feel ashamed of.

Sometimes, as people who have courageously and boldly fought for our right to a safe existence, we are often expected by society, by professionals, by family and peers, to always act from a place of unwavering strength. To resist discrimination, hatred and personal trouble, all while having a smile on our face.

But being ‘strong’ without fail is not at all sustainable or realistic. We, just like our ancestors whose lives we see clearly and sincerely, are not unbreakable or infallible.

All of these don’t have to be things you hide or ignore. I know it’s easier to shrug off and repress your emotions and needs to preserve your energy or avoid adverse reactions from others. I truly understand. However, your claim to things such as self-expression, enjoyment, and receiving help exists, regardless of another person’s ability to understand your presence in its entirety.

Fibromyalgia has been a part of my life for almost 8 years. Looking back to when I was first diagnosed, I see how much things have developed and expanded. This includes my character, the management of my condition, how I am on a day-to-day basis, my relationships and what/who I gravitate to.

Time, patience and recognising any hints of inadequacy that came up helped me to come to the eventual understanding that my pace - fast or slow - is important to listen to.

It also led me to the realise that our personalities are constantly in flux. There will always be things we are working on. Even at this point, there are occasions where I feel uncertain about slowing down, especially when I’m completing work for others. Sometimes, I forget to pay attention to my body and rush. Still, with compassion, I forgive myself and mark it as another opportunity to remember that I’m learning to take things at my pace, which changes.

Before I close this letter off, I’d like to say that it isn't often that I get the opportunity to speak to my community. It has been a privilege to provide you with some words of comfort.

I wish each and every reader the best.

Peace and authenticity,

Dorneka